Monthly Archives: December 2010

A Christmas Story

We spent Christmas Eve at Aunt Polly’s house; all seven of the Duff children (grown-up now), assorted spawn, and Meema and her husband Donald. A potluck dinner was followed by the passing out of gifts. There were no small children present, and so it was all rather civilized compared to previous years.

On Christmas morning we drove to Jemesii and Jamie’s apartment, stockings, gifts for them, and a coffee cake in tow (my Mother’s recipe–thanks Mom!). Their little chihuahua puppy, Olive, provided entertainment.

We said goodbye to the kids after a couple of hours (Pete wanted to hang with his sister…well…Olive really) and David and I drove over to his Mom’s old house on the water, now just about completely vacant. I did a quick (and chilly) search for glass on the beach, and then took a few photos inside the house.

David and Buddy and I then got in our respective cars (we hadn’t thought we’d be going to the same place) and drove a couple of hours to Longmeadow, where our friends Melinda and Kihan live.

The bunnies are Christopher and Lizzy on Christmas morning (their family is a fan of A Christmas Story, and Melinda thought this would be really, really funny, which it was).

Kihan was recipient of the iconic leg lamp.  And I was given the most beautiful pillow in the world; Melinda and I had stroked it in a shop on Newbury Street some weeks earlier. Awesome friend, Mom and giver of gifts.

It was a wonderful but brief visit. Dinner, Lizzie’s photos of Argentina and Christopher’s tutorial regarding his Kindle. Shots of sipping tequila paired with dark choclolate, blackberries and clementines. A Nor’easter was on its way however, so just before noon on Sunday we headed north, right into the storm and a traffic jam on the Mass Pike.

Eventually we took an alternate route, and were able to evade the traffic and outrun the storm. Next stop was Amesbury, where Pete had traveled with his sister to visit Jamie’s family. After scooping him up, we had a yummy meal at Flatbread pizza, and another long drive home.

What a day. Once home, we opened our own gifts under the tree. Or rather, David and Pete did.

Ok, I exaggerate. My sister Bink sent along some lovely parcels. Best of all was a wee bird nest, lovingly woven from grass, horse hair and dryer lint, complete with two little eggshells (one is tucked inside the other). Magical.

The boys enjoyed their gifts, and then David fetched a smallish box for me. I opened it up and there was a jewelry size box inside. This was getting interesting. Inside that was a small silverish cube. Guess what it is, they both said. No idea. Look deeper in the box, they said, I did. There was a not quite clean kitchen spoon.

Our dishwasher has been pooping out, and so that was my Christmas gift, a new dishwasher.

Here’s the thing about Christmas. It’s about giving, not receiving, right? In which case, I had a stellar Christmas, as I can’t tell you how many gifts I carefully selected and wrapped (we both have big families). I think I helped make Christmas a little brighter for quite a few people, and that makes me really happy.

But, it’s still really great to feel like somebody put some thought into making sure my morning was special too. Like that bird nest. And I count on David in this respect, and for reasons I can’t understand, but which seem rather passive aggressive, he usually puts it all off until the last moment. Which means he then has to scramble, and comes up with something less than inspired.

So, I was hurt. And mad. I imagined breaking every ornament on the tree, and then pulverizing them to a fine powder. Putting it all in a jar and calling it ‘Compressed Christmas’. I resolved that next year I would send out a few checks and then go on a trip by myself somewhere; skip this Christmas business all together. I have this theory that hamsters were put on earth to break little children’s hearts; they fall in love with these cute little mammals and then a year later they die. We’ve been down that road five times now. Well, sometimes I feel like I’m still a kid and Christmas is my hamster.

David has a set of plates that belonged to his Grandmother. He loves those plates, and they are used only for special occasions. Should anyone offer to help wash up after such an occasion, I demur, advising them that should they accidently break a plate, they would have to leave and never come back. When wishing to express my displeasure with something David has said or done, I have (on more than one occasion), threatened to break those plates.

Well, the day after the day after Christmas, we had yet to make peace. I was laying on the couch. I heard David open the china cabinet. He brought me a plate.

It was the sincerest form of apology. I resisted temptation.

I had to leave early the next morning for my monthly appointment in Boston. A blizzard was still raging outside. David asked if he could come with me. Under the circumstances saying yes seemed like the best thing.

On Tuesday morning we both drove to Boston. At the conclusion of my appointment, David asked if I would go across the street with him. He led me to my favorite store, Good. Once inside, he said I could choose anything I wanted. This was way better than a dishwasher. I found a pair of earrings, shaped like anchors. A ship safe in the harbor; I liked the symbolism.

Truce declared, we agreed to try to get it right next year.

In the meantime, we are hunkered down at home as Pete’s had a whomping fever and a  nasty cough for several days. We might not be attending any New Year’s Eve parties.

Oh, and I asked David if I still would have gotten the earrings if I’d broken the plate. He’s not sure.

Having a moment (fragile)

This morning I took a seat in the sun room with my cup of coffee. A  favorite CD by Sufjan Stevens was playing and the Christmas tree was glittering in front of me. Buddy sat at my feet and David was laying a fire in the next room. Suddenly I was overcome by emotion.

David walked in the room, saw my tears, and hugged me. “I just want to stay”, I said. He hugged me harder and responded “we want you to stay”.

I just really like being here. And as I was contemplating the Christmas tree, it occurred to me what a metaphor for life it is. Take a tree, a living thing, beautiful in its own right, but made even more glorious with each carefully hung ornament. Each of those ornaments represents  a moment, some accidental, some particularly sentimental.

There is the victorian birdcage that belonged to my grandmother. The clothespin doll I made when I was a child. August’s little wool sheep. Jemesii and Peter’s delicately handcrafted snowballs and icy little planets; each adorned with miniature figures. And the occasional bulb found at a thrift store; someone else’s Christmas memories.

Some of the glass balls are so very delicate, and every year as we are decorating one or two are fumbled and broken (usually by me). Should it be a particular favorite, we might be sad, but never for long. There will be others. The entire process requires a fair amount of concerted effort for something which is in existence for such a brief time, yet we would never forego it.

And then, in a moment, Christmas has passed, the needles are dropping, and it is time to retrieve each ornament and return it to its bed of tissue paper. Stripped of decoration, the tree will be dragged to the brush out back, where it will become a temporary perch for small birds and animals.

The ornaments, however, will be unwrapped yet again and carefully hung on other Christmas trees for years to come. Eventually, those that are not lost or broken, will be handed down to our children. Just like our memories.

Tis the season

This is the shortest day of the year, the winter solstice, and our son August’s 25th birthday. He is in Mexico with my sister Bink’s family. Today they are snorkeling; perhaps last night they were able to view the lunar eclipse of the full moon. Unfortunately it was overcast here, but I awakened at both 2 am and 4 am and noted the quality of the light; aware that up above the clouds a celestial show was in progress.

Christmas is almost here. Last week I carted packages to UPS four days in a row. My family is broadly dispersed, and although mail ordered gifts would be simpler and possibly cheaper, I get too much pleasure out of assembling eclectic collections of unique givings, and frankly, the recipients have all come to expect it. The one year I purchased gift certificates for my nieces, word came back that they were quite disappointed.

It’s going to be quiet here these year, as neither our big kids nor any other family members are coming. That didn’t stop David and Peter from bringing home the biggest tree yet; a gorgeous 11 footer.

We always put on Christmas Carols as we decorate the tree, and it still feels (almost) as magical as it did when I was a child. Over the next few days, I will get some baking done, and then on Christmas Eve we will head south to Mattapoisett to celebrate with Jemesii and Jamie and David’s family.

A  confession:  although I adore Christmas, I am always even more excited about the advent of a new year. Putting the old one to bed, and starting out fresh. The possibilities!

Quick fun

On Saturday David, Pete, Buddy and I packed up the car for dinner and a sleepover in Ipswich, Massachusetts. Ipswich was our home for eleven years, and it’s more than nice to go back and visit.

The party was at Beth and Johnnie’s, and included our good friends Chris and Ann. Great food, lots of wine and much catching up and laughter all around. Buddy was honored to be included and I stayed stayed up well past my usual bedtime; it was actually past midnight before I signed off.

We all slept in on Sunday, except for Johnnie, who was working (he’s a sound man, and is currently on the crew of a reality show about hoarders–sign of our times). Beth whipped up some biscotti and french press coffee for breakfast, and then we stopped in at Chris and Ann’s, where Peter got to hang with their son Cooper and new pup Neko, and we had a tour of the work-in-progress renovation of their home.  And we were fed once again; mozzarella, basil and tomatoes sandwiches.

A trip back to Ipswich is always bittersweet for Peter, as having spent the first ten years of his life there, he really feels the tug of his roots. I understand, but as time goes on, I think he will learn to appreciate the very special environment we have in the mountains of New Hampshire.

I too, love the ocean, but our interaction with the life contained by all of that water pretty much stops at the shoreline. It’s much like the sky; another amazing environment which we, without wings of our own, must usually observe from the ground. Even the desert is foreign and unwelcoming to all but very specialized life forms in a way in which the forest is not. Beneath the canopy of trees we can conceivably find food, water and shelter and thus it is a naturally hospitable environment for humans (and of course, lots of other creatures). And I love the fact that we can just walk out our back door and deep into the woods.

Anyway; before I leave Ipswich, one more special note. Our friend Chris is an accomplished practitioner of what he refers to as ‘piggyback’ art. I took a quick peek into the inner sanctum of his studio; for those who would like to see more, follow this link to Eddie Breen.

Not a good night’s sleep

I fell out of bed two nights ago. David heard the thump, and ran upstairs to find me sitting on the floor next to his side of the bed. My heart was pounding and I had no idea how I’d gotten there, but I was all too aware of what I’d been doing a moment before; there had been something beside me, looking rather like a wire carapace, and if it was able to touch me (which it was just about to do), I would die instantly.

It is a recurring nightmare for me. And unusually realistic, as I suffer from a condition called parasomnia, a type of sleep disorder. Generally it manifests as a night terror; dreams so frightening that I may yell out or bolt from bed. On one occasion when he was three years old, Peter entered our bedroom just as I was experiencing a terror, and in my confused state I believed him to be a little monster and I tossed him to the ground. The next morning he said “mommy, you flinged me”. That, of course, scared us all, (and broke my heart) and for awhile I took an anti-seizure medication in an effort to control the episodes.

With time, my night terrors decreased in frequency and I went off the medication. However, I still have one of these dreams every three or four weeks, and they are remarkably similar in theme; death is potentially a breath away.

I would rather never expereince these terrors, although I cannot remember a time when I didn’t. The anti-seizure medication helped, but it came with its own laundry list of side effects.

If there is a bright side (I’m always looking), my survival instinct is strong. I fly out of the way of perceived threat. Funny, I always hated being caught. So much so, that in a game of chase as a child, when cornered, I would sometimes reach out and tap the person who was ‘it’ before they could tag me; as if that somehow gave me back some personal power.

At the moment, a long, narrow bruise, 10 inches long, blooms on the inside of my right arm. There is another, slightly smaller, on my right thigh. I do look as if I’d participated in a skirmish. But the important thing is, I awoke, victorious, the next morning. Slightly battered, but this time on the right side of the bed.

And now, I play catch up

We are back in Meredith, and it is cold, cold, cold. It has been a week crammed with all sorts of activity, and I will now do my best get up to date.

Our flight home was uneventful, although this time everyone was asked to submit to a full body scan. As I am a frequent flyer when it comes to CT scans, I opted for the pat-down in lieu of even a small amount of additional radiation. Surprisingly, they asked Peter (who is thirteen) to go through the scanner, but he requested a pat-down as well, even though it made him acutely uncomfortable. Sad times.

We’d left Marfa at 6 a.m. for the airport in El Paso, and it was well past nine when we pulled into our driveway on the east coast. I immediately went to bed, as I had yet another 6 a.m. departure for Boston on Tuesday for a CT scan (like I said, frequent flyer). It was hurry up and wait at the hospital though, and my scan was two hours late. Good thing I brought a book.

Wednesday I unpacked and started putting our house back together after the work that had been done (looks beautiful handyman Dave), and Thursday I left the house at 5 a.m. for my appointment with Dr. Shaw.

The first thing Alice (Dr. Shaw) discussed was my CT report. She was very pleased, as everything has remained remarkably stable, and the new nodule in my right lung had actually resolved. The report read as follows:

“Lung and Airways:  Status post left lower lobectomy. Interval resolution of 6-mm right upper lobe nodule. Left upper lobe mixed attenuation nodule, now measures 1.8 by 1.2 cm, previously 1.8 by 1.3 cm. Another mixed attenuation opacity in the left upper lobe, now measures 4.5 by 1.5 cm, previously 4.7 by 1.4 cm. Multiple other solid, groundglass, and mixed attenuation nodules are unchanged. Mild interlobular septal thickening. Again noted at the left lung base. Pleura: small left pleural effusion, not significantly changed.”

Stable and interval resolution; those are the adjectives I like to see on a report.

Next we discussed the biopsy. Obviously, it was positive again for cancer. There were no further rearrangements or mutations of the original EML4-ALK mutation. This means that at least some of the ALK inhibitors in the pipeline might not be appropriate for my next line of treatment. I was disappointed by this news, but Alice concentrated instead on the fact that for the time being, my recurrence is proceeding very slowly. I continue to feel good and perhaps due to the advair, my wheezing has lessened as well. So, the scenario she imagines for the future is this:  I will stay on crizotinib as long as possible, and in perhaps six months or so, the crizotinb would be combined with another targeted agent.

I left her office feeling pretty jolly, and after picking up my paper bag full of crizotinb, I met up with my dear friend Melinda for an afternoon of traipsing around Newbury St.

More catching up on Friday, and then everything ground to a halt for a while in the wee hours of Saturday morning. I awakened about three a.m. with a headache and an upset stomach. I groggily downed some antacids and relocated to the couch. An hour later I was up and grabbing for a bowl, for what was merely the onset of eighteen hours of laying flat on my back and/or vomiting.

For some time now, I have had nausea and occasional vomiting as a side effect of the crizotinb on about one day a month. At this last visit, I remarked upon the fact that it had been several months since that had happened. Well, I guess I spoke too soon. This was certainly the most severe episode I have had, and I have to wonder if the antacid had something to do with that. I had noted previously that calcium supplements in conjunction with crizotinib increased my nausea. The Tums that I took contain calcium carbonate, so I suspect that exacerbated the situation. I won’t do it again!

My goal this past weekend had been to plan a quick trip to Toronto to go visit Guillermo (see comments), who I  fondly refer to as the co-author of this blog. Three fourths of the way thru my puke fest, I felt well enough to check my email and opened one from Guillermo, who is undergoing radiation, in which he confessed that he didn’t feel well enough for visitors. What follows is a (slightly) edited recap of our exchange:

Dear Linnea –
This is not my usual email. I am not feeling so well these days.  Radiation is much harder on me this time.  I am tired all the time and just generally feel unwell.  I have no appetite and mealtimes are completely uninteresting.  I didn’t go for my sessions last week after I send you last email because I felt so bad,  the next day I had an appointment with the radiologist/oncologist who had blood work done plus urine test and sputum test to check for an infection in the pleura, she also requested a CT scan for next week.  I have to go on Monday for a make up radiation so that I have the full ten sessions.  I will be so glad once it’s finished.
To rest in the weekend we gave up 2 subscription theatre tickets.
I was really looking forward to meeting you.  However, because of how I am feeling I think it better with Xmas so close if we postpone it until the spring.  This is a big disappointment but my energy is non existent at the moment and I feel bad that you have to make such a long drive and I will not be the best company.  I hope that once I recover from the radiation and can start Alimta my strength and energy will return.
We plan and the gods have a good laugh.
( ) ( ) Guillermo

Guillermo, I more than understand. I am so disappointed that you are not feeling better. Thanks for being honest but also making room in your life for me and please let’s stay in touch. Even if you’re not up to co-authoring my blog 🙂 let me hear from you. I will keep your fans apprised.
Funny, I have hesitated on making my final plans. David said there were people caught in traffic for twelve hours the other day due to a snow storm on the way to Buffalo, and he was really encouraging me to fly. And then late yesterday I had an unusually bad reaction to my medication, and I ended up vomiting for twelve hours straight. Sucks to feel bad, and has a way of making you not care about anything else.
My scan last time was stable, and the bright spot in my right lung had disappeared. The first time in a long time I have seen the words stable and resolution on one report. Good thing, too, as I do not have a mutation of my mutation, and so there is no magic bullet in line for the next treatment (yet).

So, I guess we’ll have to let the gods have their laugh, but I am sending all the atheist good energy your way that I can muster. As I have said before, even though we’ve never met, I feel as if I’ve known you forever. Were it true, I’m sure we could have gotten ourselves into some fine and fun trouble. I love you, my friend, and please ask Beryl if you are not up to letting me know how you are, if she wouldn’t mind sending me an email occasionally. Please give my love to her as well. Linnea

Dear Linnea:
4.30 pm Just returned from 2 hospital appointments. Glad that torture radiations ended yesterday, for 3 days my throat is sore, my appetite is returning but have to eat baby food like yoghurt and peanut butter, I asked for BBK medium rear and got it over done. My prescribed gourmet drink is Muscosiks mouthwash. All the tests  blood, urine, sputum are negative, so this is positive… Tomorrow evening I  am going downtown with Beryl celebrating with an extra CT scan. Expect to feel much better for Xmas, takes 1 month before we know if the radiation helped like with pain and sweat reduction.
I gave advice in the rad section today. An old indian man with wife dressed in shari ask me “Do you know radiation?”, Yes I had it many times., “I have something in my head, they say it may be cancer. Does radiation hurt when they do it?” No, you feel nothing, people get a sun burn, but I didn’t and you have darker skin, may hurt latter, is the healing process. “Do you have cancer?” Yes, for 5 years here, pointing to my chest. “Breast cancer?”…
Also for 3 days we have the first wintery weather, Toronto is good just 1″ of snow but places in the sow belt around Buffalo or London have over 20″ and I am glad that you didn’t have to drive, many accidents, David was right but is nicer to have the car.

You may worry but I waited to finish rads and have test results before replying. I will continue co-authoring your blog even when we know that men are boring and not sensitive like women. Today was really nice first we meet my petite italian Dr. Dory, always star and ends with hugs and talks about my girls. Waiting for the radiologist doctor we came across my favourite radiologist technician Petula, she is around my daughters age,  and was hug and kisses again and explanation to Beryl that we she has portuguese blood and we talked a lot about our trips, she was in the basque country twice this year, loves San Sebastian were I had family and spend vacations good times. I wish my oldest daughter showed feelings like Petula.

Great news and relief with your scans, maybe my yelling to the gods worked.
Vomiting 12 hours straight is horrible, my dog just vomited 1 hour after enjoying 1 pound of belgian chocolates.
If I vomited like that I will be playing sick baby for a week, women are different, practice vomiting during pregnancies,,,
hum, maybe, you really had a good time in Texas and got the magic bullet.

I think is great that Beryl and you email, you have things in common, things to share, things like Me, she is going to write.
Your good atheist energy arrived, I feel better.
With my first girl friend I coudn’t say te amo (I love you) and said instead the quiero (I like and wan’t you), silly me
My good, good friend I love you
GuillermoRed lipsWilted rose

PS select, cut, copy and paste to your blog Red heart

Hey you (G), thank you for the lovely email. Most of it will be going in my blog manana. Made me weepy even (and ok, yes, I’d had a glass of wine or two but I would have (wept) anyway). Sounds as if your spirits are up. I confess to having been crushed by “this is not my usual email” although I appreciated your candor. I’m just kinda crazy fond of you and I like the world better with you in it. If you heard my message (yes, I called), I hope you weren’t surprised by how much I sound like a kid. In my next life I will have a deep, sultry voice (think Annie Lenox). I would love to have Beryl email. I liked the sound of her voice on your message, and I have always assumed that, married to you, she is a fabulous person. And as for magic bullets, well, I’ll never tell. However, no more ninos for me–chemo took care of all that business.
Love, Linnea

So, Guillermo’s comments go in the blog this time, making this the longest blog of all time. And one long week as well. Glad it’s over and happier yet that my partner is back.

Winding down Marfa

In between packing up and cleaning, we crammed in two special visits before our departure early Monday morning. We have a friend in Marfa who is an entomologist specializing in dung beetles, and I’d never seen his collection. On Saturday we visit with Dave and his wife Theresa and viewed tray after tray of spectacular bugs. As Jem would say, we were geeking out.

Sunday David and I went on a short drive to the Davis mountains, where our new friends Kosta and Ganka live. They are transforming what was, honest to goodness, a survivalist’s compound (complete with chain link fencing topped with razor wire and surveillance equipment), into a light filled and welcoming little paradise. After champagne and Ganka’s homemade biscotti, we walked around the property which is filled with red rock and scrubby trees and overlooks miles of plains and plateaus. It was a magical end to our Marfa visit.