Tuesday, March 15, 2011
Less is More - part Two
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!
Monday, March 14, 2011
Less is More
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.
Saturday, March 12, 2011
Forcebook.

Sunday, February 20, 2011
Sunny with a Chance of...?
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.
Monday, February 14, 2011
Happy Valentines Day

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.
Tuesday, February 08, 2011
Just Fooling Around
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Hearts and Lace |
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Hearts! |
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?
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Hidden Heart |
Monday, February 07, 2011
Old Things
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Bottles on the Shelf |
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!
Saturday, February 05, 2011
Lining up and Falling into Place
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Mini-Golf, replicating the alignment of the heavens. |
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.
Wednesday, February 02, 2011
It's Winter, Damn It!
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.

Keep shoveling my friends.
Monday, January 31, 2011
Transitions?
Now, of course, you (and perhaps the folks from Children's Hospital) would think me quite mad. Fried foods? Are you insane? Well, yes, but that's not the point. Only those that deal with Tom on a close level know how hard it is to say no to him. And believe me, I say "no" plenty. With conviction. And often I "win".
But that night he was firm about not wanting ANYTHING else. Perhaps another mother would have been stronger, resisting his persuasive ways, especially since his health depends on it. Now, it's not that he has a food allergy, or he has a heart condition, or high blood pressure. In fact, Tom has always been pressured to eat, to gain weight - etc. Fried, fatty, greasy foods were never a problem.
But these last several months something has gone wrong in his GI tract. It has nothing to do with his liver, not directly anyway. I supposed his three episodes with C. diff. may have "weakened" his gut, maybe the flora aren't happy, or something, but since November, Tom has been getting sick every two weeks. So the theory for now is that fatty foods are exacerbating the problem, and he should refrain as much as possible.
So why oh why did I let him have the fried haddock? Lesser of three evils I suppose. I checked the fat content as best I could of all the choices, and the haddock was the winner. So, he had some haddock, maybe one or two french fries - if that - and one onion ring.
He was fine all night long, into the morning, when he had cereal and milk and then we were off to church.
This was a special occasion. It was to be the very last sermon of our pastor, the Rev. Keith Weekly. Keith had been our interim pastor for about two and a half years. This is the way it goes in a Congregational church. Our permanent pastor had retired, and the typical procedure is that the area conference sends a substitute pastor until the church can form a search committee, and select a "settled pastor". This takes time, the forecast is usually for one or two years - give or take.
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Tom at his Confirmation, exactly six weeks to the day after his transplant. |
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Tom and Keith |
And when Tom had his transplant, Keith was keeping the congregation updated during the lengthy surgery, and he came to the hospital to see Tom post-op.
So naturally, we wanted to be there for his send-off yesterday. And there was a luncheon. And cake. Actually two cakes, one was a pretty one - welcoming a couple new members into the congregation, and the other was Keith's "Happy Vacation/Retirement/Thank you" cake. While the first was pretty (and tasty), the second was amazing! Decorated like a professional - wish I had a picture!
So, you are all wondering, what did Tom have? Well, he had some cake, then he had some pickles, one small piece of sharp cheddar, some red peppers...nothing very substantial. And by the time the lunch was over, Tom was helping put away chairs and clean up, but he really wasn't feeling well.
Was it the pickles and peppers? The cheese? The cake? The punch? Who knows, but he was home taking showers and feeling crappy. NOT horrible, but not great. He tried to do some homework, tried to play some X-Box, but eventually he felt worse and vomited around 5:30.
No dinner, just some fluids. Pills went down OK, but by 1:00 am, he was up sick again. Then sick again at 2:00 am. Staying home from school again, but managing to be on his laptop for now.
So, while the transplant would ensure a good level of health, we knew that the first year would be tough. But this is not what we or the doctors had anticipated. While these bouts of vomiting don't seem to point to anything life threatening - it's very, very exhausting. Especially trying to keep Tom's mood up, keep him motivated for school. And that's a whole separate issue. The consensus from Boston is that these periods of illness could have a strong emotional component, and a combo of anxiety and the foods are bringing on the illness. It fits, but I'm not sold entirely on this theory.
It's hard to get through this transition period, because in some ways it feels like we're going backwards, or rather starting on a whole other path of health problems. While God is guiding these transitions, at our church, and in our lives, I understand the church part, but this stuff here? I'm clueless.
Thursday, January 27, 2011
It's Coming, it's Coming.
Wednesday, January 26, 2011
Other People's Stuff
A colleague of mine, Lisa McKay, has been posting some yummy sounding bits on Facebook about what she's making for dinner. She is a former executive editor over at Blogcritics but now she's writing more about food and gardening. How wonderful! Not that writing about current affairs or the latest TV show is a bad thing at all, but I love the flair she brings to something simple.
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Blossoms in Waterford |
Another blog that's wicked cool (as we say here in New England) is Face to the Sunshine. Miss Sunshine is a personal friend that I met in karate class some years back. Although she was always very pleasant, I didn't think we had that much in common at first. Miss S. was a homeschooling mom, something that I could never imagine doing. Not just the challenge of keeping up with the curriculum, but the challenge of spending THAT much time with my kids. Of course, I spend a lot of time with them anyway, but the homeschooling concept, though a great plan for many families, kind of gave me the willies. Anyway, Miss S. proved to be a great friend, a fantastic friend, a fun friend. And we have LOTS in common, besides a love of karate. Coffee, chocolate, good writing (and she's quite a good writer), exploring...and much more. Her blog is a general "slice-of-life" type affair, and very well done.
Well, that's it for now. Must clean, do laundry, the usual. But all are healthy, so it's a good day.
Friday, January 21, 2011
Little Cat Feet

Do y’all remember the poem by Carl Sandburg? I barely did, so here you go:
FOG
The fog comes
on little cat feet.
It sits looking
over harbor and city
on silent haunches
and then moves on.
Pretty nice imagery and the analogy is fairly apt, fog comes in quietly, just suddenly appearing and then it is gone. Cats, hunters by nature, can operate with wonderful stealth. And they do whatever they please, appearing and disappearing without invitation. I can’t see Lewis Carroll using a Cheshire dog*
But my cat? He’s freakin’ loud! I think he needs to have this poem read to him, take a hint or two. Alright, if you must know, he’s perfectly capable of being quiet and stealthy. He’s caught a few mice in the house – so I know he can do it.
Then again, he seems to have some canine genes, or something. Dogs have a reputation of being very dependent on their owners, not just for food and toileting, but for companionship, for love. And cats are thought to be aloof and rather patronizing. Our Two-Bit is…different.
This kitty LOVES to be petted. When he gets a victim family member nearby, and a wee bit of petting and purring has commenced, he then does “the Plop”. That’s when he arches up his back, getting hindquarters as high in the air as possible, and then just sort of collapses in one heap on the floor, his desire for increased petting and stroking made evident by his posture. This goofy boy rolls to his back in a totally submissive pose, looking more like a dog than a cat, and he actually wants his belly scratched. Oh, and the purring…talk about – he sounds like he is at the starting line at Loudon Speedway.
So, the loud thing I mentioned earlier. When Two-Bit is feeling needy, he follows us around, meowing with real gusto, back and forth. In this room and out. Into the living room, into the kitchen. If the bathroom door is not securely latched, in he stamps, meowing questions or statements – not really sure what it all means. Of course, at certain times of the day he is asking for a meal. And maybe an hour later, he’s asking for a snack. And in the mornings, he’s developed a habit of asking me for attention, I call it “coffee and cuddles”. Sometimes, the minute he sees me with my coffee cup, he gleefully clomps into the living room and hops up on the windowsill, looking at me expectantly. He wants me to sit in the chair by the window and sip my coffee while we both look out the window and of course he’d get petted.
Not that I or anyone else in the family begrudges cuddle time with the kitty. But c’mon, we have our own lives/chores/needs/schedules. It’s like having a two year old following you around asking to play with you all day long, or feed him, or change his diaper, all the while asking “why”.
Bed time is especially hilarious. I’m usually the last one to bed, typically between 11:30 or 12:00. The habit is for the cat to go up to bed with Tom (sometimes Tom has to force the issue) around 10:00, and “tuck him in”. This means that Two-Bit lies on the bed, never in the right position for Tom’s liking (he usually gets a face full of cat butt), or sometimes the cat pounces on Tom’s feet – just for fun. But this tucking-in time only lasts about 10 minutes, tops. Then down the stairs comes the cat, and then he sits and stares at me. The minute I get up off my chair for anything, wee Two-Bit is up and following me around, stomping his feet, meowing, getting tangled up with my feet – it’s not a lot of fun.
And when I am really showing signs of going to bed, he’s so thrilled! The going-to-bed preparations take a few minutes, and Two-Bit follows me every step. Often I finally head to the stairs, and ohhh MAN is he excited – but his fervor is squashed when he sees that I have abruptly turned around because I forgot to turn on the dishwasher, or blow out a candle, or turn down the heat. He’s rolling his little kitty eyes for sure.
So, NOW I am going upstairs for good. Two-Bit races up next to me, and he’ll skid to a stop at the threshold of Tom’s room. He will typically take a few steps inside, meowing really loudly. I infer that to mean that we should check on Tom for a moment, and sometimes I indulge him. Mostly I just keep trying to shush him, as I make my way into my own bed.
Kitty is still mewing, maybe it’s not that loud, but it seems loud, because of the contrast of the very quiet of the bedrooms. Once I’m in bed, Two-Bit paces on the floor, waiting for an invitation to come up. I do invite him, hoping to just shut him up. So then there he is, purring again like a race car, and he comes up to my face and sniffs me. I scratch his chin, and his ears, not for too long, because I’m tired and lazy. Sometimes he licks my forehead, or puts his paw in top of my hands. It’s all very sweet.
And then he’s off the bed minutes later, plodding down the stairs, looking for mischief, or mice. Sure, now he’ll quiet down.