The Kindness of Strangers

I'm amazed really, at how much it hurts. Each time that Tom goes through something, and after he's getting better, and the care-giver adrenaline subsides, I'm left with a wound. It hurts, and each time it surprises me at the severity and at the recurrence. 

Oh, and the timing. 

That's the kicker. It's been a little over a year since Tom had his transplant, and I think we all thought that most of these sorts of days and worries would be behind us. Yes, we expected some new worries; the rejection question, and his susceptibility to illness would be the big ones. But this other stuff, the CVS* type of sickness, or whatever it was that plagued Tom from November to March and caused him to lose over 30 days of school this year, no one quite expected that.


Yet, here it is, back again, for a brief stop or an extended run,  or something new is going on.


He's fine now, sort of. The Make-A-Wish trip/getting ill thing was horrible (and the Memorial Day weekend illness was a bit scary), but he made the best of it and at least got in the last day of E3. Fine for the rest of the time, and for the trip home. And he was fine for his last week of school/finals, and fine for his first week of summer vacay, but last night -  he vomited.


It's makes me sound a bit mad - getting all dramatic about a puke session. But when this has happened again, and again, and again, and again, and again, and then wethoughtitwasoverbuthegotdreadfullysickinLA - the drama is already built in.


Last night was hopefully a one-off. It could have been anything. Food at Chunky's didn't sit well? He was overtired from two sleepovers this week? Who knows. And he felt better after that one vomit. Been OK today, just a little tired.


And we've mostly recovered from the LA thing, that wound is healing. 


But I am covered in bruises. Not the cool kind I used to get at the dojo, although I feel like I must have earned some sort of new rank by now.  


These bruises are quite invisible, but just as real. These ones though, I didn't expect. I'm really sucker-punched, each time.


However...


I'm also hugely and amazingly amazed at the "kindness of strangers" Did I say amazing? I'm having a hard time processing it still.


Now I would imagine that an organization that knows they are dealing with a Make-A-Wish recipient is going go out of their way to please the kid. That makes sense. But what happened with Tom - I still don't know how to describe it.


Well, he's been getting stuff. Lots of stuff. I was putting pictures on Facebook, but I'm not going to do that anymore, I don't think. I don't appreciate these gifts any less, but I'm thinking it will look "showy". We pretty much expected these items, because all the gaming folk showed Tom stuff and then promised to ship these items out, but it's almost too much.


Don't misunderstand. This isn't a criticism of the gamers. It's incredibly cool. And we are receiving things in the same spirit, we get why they are doing this. 


But when I consider all this generosity, I'm still at a loss to describe how surreal it all feels at times.

This Reads: "We'd like to thank Tom Williams and his family for supporting our family. Bethesda Softworks" Yes, really.

But for now, I'll leave it with "humbling."


*Cyclic Vomiting Syndrome

Scattered Vacation Thoughts

Scattered and distracted, ignoring the disarray of luggage and souvenirs. Questions remain about biopsy results and blood counts. Photos need tagging and describing. Dead flowers are wilted from overdue stay in milky water but I don’t have the energy to get rid of them.

 

So many to thank for helping wishes come true, but the miasma of battle fatigue and depression keep me motionless. Heavy arms and weary heart thwart my good manners.

 It will pass. It will pass.

Persistence - and Passion - Pays Off

A year ago today, Tom had his liver transplant. We celebrated with just the four of us last night at the Olive Garden, one of Tom's favorite restaurants. I'm sure his docs would have been thrilled to see him eat two bowls of chicken gnocchi soup, most of his steak and potatoes, three bread-sticks, and dessert. We certainly were thrilled.

And how did he celebrate today? Well, the kid had to go to school. They sort of require that.  : )
But Tom was able to realize a big dream, of having a huge assembly/presentation at his school with (I believe) most of his sophomore class, and many seniors, and perhaps some juniors were there too. Lots of kids.

Tom is stubborn. He annoys me greatly much of the time with his persistence about stuff. But I've known for a while that this quality was going to serve him well, as it did today.

For this assembly, Tom had lined up quite a few speakers. He had Mike Slama, a man who received a heart transplant a few years ago, talking about how lucky he has felt every day, and how happy he was that Tom was able to share in that same feeling of gratitude. Also on the agenda was Sam Scott, one of the program managers of the American Liver Foundation, who spoke of liver health, and had some stark images of healthy and sick livers. At the sight of  very diseased, cirrhotic liver - I heard one student exclaim, "oh please change the slide" - yeah, it was pretty gross. 

Also speaking was Nancy Erhard, a woman whose son died several years ago, and Nancy and her family made the difficult, yet easy decision to donate whatever was needed from her son Bo. Nancy speaks at functions often about Bo's story, and she has worked with Jamie Redford (Hollywood legend Robert Redford's son) through the Share the Beat organization.


We also heard from Nick Giordano, a man who has run 11 marathons, and who himself was diagnosed with liver disease. Nick was chairman of the Run for Research Team this year, and at the very end of the day, he graciously and humbly gave Tom his marathon medal.

Even at a younger age, Tom was a fund-raiser. Here he was preparing to ride the Pan-Mass Challenge for Kids

Tom, recovering from his first surgery, age 12

And because of Tom's persistence, he was able to line up Matt Noyes, the meteorologist for NECN. We talk about Matt a lot, because he has been such a tremendous support not only for our family and for Tom, but for the New England chapter of the ALF. Matt is a very, very busy guy and he's also got a beautiful young family to take care of too. But this year, the great staff at the ALF convinced him to run in the Boston Marathon. Matt has been involved with the ALF for several years, as MC for the Liver Life Walk. He's also involved in other charities as well, and his enthusiasm for life is contagious and inspiring.


And of course, there was a nice plug about the upcoming Liver Life Walk by Hung Pham, an ALF staffer.


It takes great persistence to make all this happen. Of course, I took care of a few emails and phone calls, but Tom's passion was the driving force to bring this event alive.


It also took a lot of passion for a shy-ish 16 year old to get up in front of an auditorium of peers and tell his own story, starting from first diagnosis to his surgery a year ago. He spoke of various procedures he endured, holidays that were basically ruined, too much time out of school and other snapshots of how his illness impacted his life.




But he also spoke of his friends, and how much they meant to him, and how he appreciated their support. And Tom spoke about Rachel's Challenge, and how by either joining him at the Liver Walk, signing up to be an organ donor (for those 18 year old students), or just being more aware of others' suffering - can answer her challenge and "Start a Chain Reaction" of making life a little bit better for someone other than themselves.

Look at the Alternative

Funny but true exchange between the mammogram technician and myself:


MT: OK, now put your right sleeve in and take your left sleeve out.


Me: (trying to use humor to deflect the awkwardness of the situation)  Sure, but just don't ask me to "shake it all about."
MT: (laughs)
(pause)
Me: "Only if you have some $1.00 bills to throw at me"

MT: "Well, I guess we could get some people in off the street with their dollar bills."


Yeah, seriously this happened.


Mammograms suck. But look at the alternative. 

While I was getting mushed and tugged at, and at times I gasped from the discomfort, I kept saying to myself, even when it got quite painful. "You can do this. It hurts, but not as bad as cancer"

No Agenda

Awesome pre-game warm up viewing

OK - here I am. It's been a while. I've been a slug about writing. A slug I tell you! But I haven't been a slug in real life. Most of March has been chock full of stuff. There have been doctor appointments for the princes (this is the norm, anyway), dental appointments, a fund-raising event for the Liver Foundation, a concert, a night out with brother and GF, another Liver event (working a water stop for a training run), a Celtics game (courtesy of Make-A-Wish)...

Dropkick Murphys Concert

Oh, and OF COURSE, the birthdays! Three birthdays just in our wee family, which meant shopping and restaurant a-going. Except for me, I opted to stay in and have takeout from the delicious Blue Taleh. And then we did it again with the extended family, for there are THREE MORE March birthdays. More shopping and one more restaurant meal.

And Tom was ill a couple times during the month. Not much to say about that. Wait and see, wait and see.

Here's a random thought -

Two-Bit, - grooming The Young Prince.

Children and pets. What we love and even admire about them, is their unabashed manner of asking for what they want. When they want food, it's obvious, when they want to go out, they ask, over and over and over - again.

And when they want love? They just take! They know will not be denied. And we love that! How did things change to put us adults into a more coy, aloof, polite mode of living? OK the polite thing has a place. Discretion and tact are necessary.

But really, wouldn't it be great for us to all act more like children and animals? Private toileting aside, there are many virtues that I think we are missing out on here. 

So this post had no real agenda, just a catch up for my legions of followers. Stop laughing!

Take care and I WILL be back.

Less is More - part Two

So, yesterday was a clinic appointment for The Young Prince. About a 25 minute wait in the lab, and then upstairs for another while. Then the usual height/weight/BP. All fine enough. Seems like Dr. E. was hoping for a little more weight gain, but not hugely important.

As I expected, we spent most of the time talking about how to proceed with the cyclic vomiting issue. And we have a plan! We're going to try and tweak one of his current meds that may help calm down the GI system. And if it does happen again, we will most likely bring him to the hospital as it's happening - so they can do a CAT scan, or maybe an upper GI

I guess there is a possiblity that there could be adhesions or a blockage that didn't show up before on other tests. And if there is a blockage? I guess we won't worry about that now. 

So, it's really a minimal amount of fuss at the moment. We don't have to mess with his diet again, and he does not have to start a new med. Actually, he is going to now substitute his much hated Mepron for Bactrim! Mepron is a thick yellow liquid - the visiting nurses always called it "yellow paint". But the Bactrim, a tablet, only needs to be taken three times a week!

Less is more!

Less is More

I thought this was timely, for Lent and all. The photo, not the bracelet. Of course, any cross is always timely for Lent, but I took the photo for a different kind of synchronicity.

Recently, I hit the Dracut High Performing Arts Boosters Craft fair . It was great to see a bunch of friends and familiar faces, and try to support the program. It's shopping for a cause and I'm on board!


And because it's a craft fair, it's only "fair" that I treat myself, just something wee is all. So I had fun looking around, talking to crafters and sniffing, touching, and tasting. Two cool days in a row, the day before was a an overdue Lunch with Miss S. (Not to be confused with my other friend Miss S, who really is a "Miss S.", where the first Miss S. is not really an S. at all. Yeah, I've confused myself here.


We had a nice conversation, and delish food at LA. We spoke of the usual, mutual friends, our kids, karate - naturally, and faith.I won't bore with details, the faith topic was interesting. And good.

Back to the craft fair, I was wandering around and then  I found this bracelet, nearly hidden under some other groupings of baubles. It was exactly the kind of thing I like in jewelry. A nice mix of minimalism and flash. Yeah, I know, maybe above is a teeny more BeDazzled than Mies van der Rohe. But who's quibbling. 


The cool thing was, as I saw this It felt like a fate moment. (Or perhaps a 2 x 4 moment?). The bracelet - as they say - spoke to me. (C'mon, they say it in all the decorating magazines). I do believe that certain purchases are really meant to be for whatever reason. And an added bonus, the price was right. Kidding aside, it perfect timing. 

Must trust me on this.

Forcebook.

I’ve been thinking…

When I put a “status update” on Facebook, I’m all sorts of things. From pithy to profound, from silly to sanctimonious with the occasional lunch updates in between, I think I cover a pretty wide range of posting possibilities. And naturally, because of our family’s issues these last few years, I have overwhelmed the FB community with all sorts of liver disease/Tom’s health/fund-raising bits of anguished or celebratory “sharings.”

For good or for bad, that’s what I do. 

And what my friends post isn’t too different. Coolness all around. 

I just don't like to be forced to do something.

 A pattern has emerged lately that I am finding bothersome. Very well-meaning folks have taken to posting these little slices of emo-bossy “show your support” PSAs – if you will.

“I’m posting this to show my support of fill-in-the-blank-dread-disease/social-injustice. Only 3.24% of my besties will have the guts to re-post this as their status for one hour, please do this for all those that suffer from aforementioned dread-disease/social-injustice”

Now I’m as caring as the next person. But these bits drive me totally nuts. Sure, social networking technologies can be a real boon to those who have great messages to impart. I have NO problem with putting up blurbs for your cause. I have done that numerous times myself, as I think we just determined a few paragraphs earlier.

But please, oh please, don’t tell me what to do. Don’t tell me how I should show my support for one cause or another. I’d nearly prefer you ask me for money than to just use these campaigns. Seriously, it smacks of coercion, and that’s off putting. 

Yeah, and that goes for the multi-forwarded email tell me how sad it is that no one has the guts to continue a chain letter that mentions God more than once. Sorry, the chain is broken with me, every time. So, if you really want benedictions from the Dali Lama, or the Blessed Virgin Mary, or you really, really want your CD drive to magically pop open on cue, or you want to stop the ghost of some tragedy victim appearing in your bedroom at midnight – don’t put me in your address list.

Hey, some of those emails have some sweet messages, or kick-ass funny jokes! But if you add the bit about “please forward to all the strong women/smart men/caring folk you know” then you must realize the message fails with me. (Oh and how hard REALLY is it to just copy and paste the original message in a fresh email? I don’t need or want to see the trail from whence this message came. I really don’t.)

For the record, and not that it’s any of your business, but I support either financially or emotionally lots of causes. Special Olympics, Lymphoma and Leukemia, Gay rights, Diabetes, Epilepsy, MS, MD, the ALF, Scleroderma, Rachel’s Challenge, the Vets, the Blind, and Sun Santa. Don’t forget the Dracut Food Pantry, my church, PTO volunteer for 12 years, Scout volunteer for – I dunno – six years give or take. And some of my jewelry supports stuff – my breast cancer bracelet, my Organ Sharing pins, and those cute woven bracelets that support a school in – umm…a different country. Hey, I wear them proudly, I just forget why. (Which reminds me, I really should send a check to my local Alzheimer’s association).

Sunny with a Chance of...?

So, it's pretty sunny out. Quite nice actually. Well, cold - I guess. I have not been out, but it looks nice.

Sunny outside, but cloudy inside. The Young Prince - down again. No vomiting (not since Thurs) - but nausea and fatigue and general unhappiness. The unhappiness - like the cold everyone's been passing around - is contagious. I feel like a slug. I don't want to do anything, although I think I will force myself to do a mini-workout. If it were warmer, a walk would be super.

While the meteorologists, like our new friend Matt Noyes from New England Cable News, can predict upcoming weather patterns, no one can really predict the course of Tom's health. But I must hasten to add seemingly contradictory remark that yes, we can predict some things. He really should have fewer and fewer problems the further along we move post-transplant.


Big picture stuff is that he's had no rejections, he's gained weight, he looks great, he feels usually very fine, and he's become quite a spokesperson for the American Liver Foundation and for Organ donation. School is going pretty well...


And here is the BUT. The unpredictable weather event. 


Tom's been having a tough time keeping up. Not because of his intelligence or effort. But he keeps getting sick every 2-3 weeks. It really seems like CVS - which is Cyclic Vomiting Syndrome (not the pharmacy). This CVS thing, it doesn't all fit. It seems like many patients have a migraine component, or their vomiting is more severe during a cycle (multiple times in one hour). That's not Tom. But much of it does fit, especially the part where these bouts of illness follow a real pattern.


And now, where does this leave us? The thing is, I feel like I can almost predict now, when he will get sick. And I'm starting to look at the calendar thinking, "OK, it's been two weeks since he last got sick, what's coming up that's going to get ruined?"


I've kept these doubts mostly to myself, certainly not telling Tom what I'm thinking. I don't need him to expect to get sick on any particular date. Mind over matter, or in this case, Mind or soul getting flattened with depressive expectation. Although, he's smart enough to worry that this will keep happening.


I suppose that after having major mucking around in his gut, there can be some after effects. That all made sense the first few times he went through this. But now? Well, we just don't know.


But I know that even as miserable as this has been for all of us since November, it's not the same as having a sudden urgent issue, like rejection, or a scary infection. I guess you can equate those surprise events to a micro-burst. You might not see it coming, and it can lay down some terrible damage. 


Coincidentally, Tom, along with his fellow campers, was in a micro-burst during 2006, at Camp Wah-Tut-Ca, in Northwood, NH. He survived fine, with a huge story to tell for the rest of his life.

Happy Valentines Day

When we got married,

This was a card I made last year, it's still pretty apt one year later, with the exception of a certain TV show.










We had  

Then we had

And real life set in. So, sometimes we argued or said:










But that's OK. We're still here and we have 

And each other.

Just Fooling Around

Hearts and Lace

Hearts!

So, I'm just messing around with some still life pictures. I'm supposed to be organizing paperwork and paying bills. Just having too much fun with art!


I've got to break out the new digital camera we got for Christmas - I'm sure I'll get even better images. (hoping).

Maybe I should make hearts a theme for the month - what do ya think?

Hidden Heart

Old Things

Bottles on the Shelf

What can I say about these bottles that's already been said?

You're thinking, "Wait, what? Am I supposed to know this image? Is this something from a famous exhibit that I slept through during art appreciation class?"


Not necessarily. Not at all, really. The bottles and jars to the right are just old bottles that I started collecting around 15 years ago. They are not special at all, but they still intrigue and delight me. My small collection has been augmented by my husband's cousin Ed. He too, evidently likes these old bottles as well. And he gave me some about a year ago, and well there you go. Old bottles, just sitting and making me happy.


I really love the concept of old things. Of course, I love new things, as in new technology, but the idea that an item used to belong to someone else, someone who you don't' even know...well, goodness, that's just too cool!

Lining up and Falling into Place

Mini-Golf, replicating the alignment of the heavens.

At your left you see several brightly colored golf balls, lined up as if someone created a funky design. Which is fine, if one had lots of time on the min-golf course to play around with the balls. Usually the courses are busy at the height of summer, as it was on this day last August. 


But this design was not made by a bored golfer, it was the random way our balls landed after we each took our first strokes at this hole.


Pretty cool eh? Yeah, I thought so too!

Once upon a time, I was watching the flick Lara Croft: Tomb Raider starring Angelina Jolie and some other people. The movie had some cool action, and a convoluted plot. Part of the plot I remember, something important, or dire was going to happen once all the planets aligned - an event that was astrologically rare, yet conveniently going to happen during the time frame of the movie's setting.

Aside from coveting Angie's eyebrows, my take-away from this was that I knew that "on-the-verge" feeling. Yet in my case, this alignment wasn't a portent of a disaster. 

I've had the funny feeling during these last several years that I was very close to becoming...myself. Yeah, that's a good thing. I can't describe, or remember really, what made me have this feeling, but I swear I could feel a "click" now and then, as if some puzzle finally fit in place, or some ratchet-y thing had settled in the correct groove.

All this self-actualization or navel gazing wasn't just about my amorphous state of being or my faith, or my health, it was really about something more concrete: my writing.

I have had some wee successes now and then in this area, like the time I pumped poor Eric O. (former owner of Blogcritics) to tell me EXACTLY what a PR dude (he's actually the Director of Publicity) from FOX said about my 24 write-ups. It was a bit pathetic, like a girl interrogating her friends about what her current crush said about her. And E.O., bless his patient heart, kindly sent me the emails where the FOX guy said some sort of compliment about my writing. No, I can't remember what he said. Pity. But still, it was a good, good moment.


There's been a few other moments, that I won't bore you with now, but the point is, I felt pretty convinced I was on the cusp of something grand. 


And then the proverbial (and some literal) dung hit the fan, and life got complicated.


I've had forgotten my cusp-y, verge-y feelings and right now my successes are vastly different. Woohoo, I answered that email finally! Cooked a meal instead of take-out! Remembered everyone's appointments this week!


And the successes I hope for are more like: Cool, I finally fit into these jeans. Or, most of the rooms in this house are presentable for guest viewing.


But those other goals, they are still viable. I think my stars will align again, I think things will happen when they need to happen. I have to have lots of patience.


Kind of like a golfer.

It's Winter, Damn It!

Yeah, snow. Lots of snow. A major F-ing pain. But still, what are you going to do? Everyone is complaining, where are we going to put it? In the cities, naturally it's a concern. It's a bit tough out here in suburbia too. But in some ways, the complaints crack me up. As if there's a choice? Can we ask God, or Mother Nature - please take this (snowy) cup from me?

No, it's Winter, and we get snow. And yes, the kids might be going to school all of June. What are you gonna do?

Funny, I was just emailing a dear cousin. Dear cousin has been diagnosed with cancer. I know, right? It''s so scary, and I am having a hard time wrapping my little head around this diagnosis. 

So, what did I do? Remain silent. Silent as winter. Well not totally silent. I mentioned this news to some local folks. But did I reach out right away to Dear Cousin? Nooo. Not me. 


And I should freakin' know better. After all Tom (and us) have been through, I know very well the value of support. I'm hoping that my waves of fear and disbelief translated into surges of encouragement and hope all the way to Dear Cousin.


Since this is my husband's cousin, he has been calling and cooking, and he made a trip to her house over the weekend with food and good cheer. So that's cool. And I did email. I said that a minute ago. But it shouldn't have taken me this long. In my email I commiserated about the nature of illness and how it is not fair when it strikes. But what are you gonna do. Just keep going. Just keep shoveling.


Sure, it's OK to whine, hell - I'm a whining queen! But eventually - we just. Have. To. Keep. Going.


Actually, earlier today I was IMing with a Dear Friend - talking about the same thing - being a supportive friend during hardship. She felt very bad about not being supportive for us recently  - Oh forget it ! I say. This is a friend who is a true friend, who I know cares deeply, even if she is silent for a while. So, I hope she feels better about her imagined shortcomings in the friend department. She does just fine.


If Driving Home from Boston ever becomes a reality, a goodly section will be devoted to friendship. Something that can be beautiful, even in the face of disease, unemployment, and even winter.

Keep shoveling my friends.