Saturday, October 2, 2010

THE GOOD NEWS!!

It was a crazy day at the doctor's office. We were there for a check up and to
get the results of his most recent PET scan (the test that shows if there is any cancer
in your body). The place was packed and we were shuffled from place
to place, surrounded by an extraordinary number of people in the same boat.

Our favorite nurse, a sparky late 60s something, called us in from the waiting room and
took Andrew's vitals. "How's the belly-dancing going?' he joked with he. She laughed
and quipped back, "It the kinky sex that keeps me going." Their usual banter.

She dropped us off at the waiting area for the infusion room which
was standing room only. Ann our favorite nurse there, flushed out Andrew's
port, took a blood sample, and put us in an examination room to wait for
Dr. G. Twenty minutes later his physicians assistant came in to do the
pre-game warm up -- listened to his lungs, asked a few questions.

When she left we we're both getting impatient. We had read all the magazines worth
reading (drew the line at Golf Digest) and we'd been there close to an hour
and a half. . . Final the door flew open and our lovely Dr. G. blew in. "So good to see you both."
he said warmly as he grabbed a hand shake from each of us.

He started talking about how we'd see him every three months from now on.
A few sentences later we realized that he wasn't talking about more treatment.
We gave each other the look --"Did he forget to fill us in on something?"
He realized at the same time that we didn't know what was going on.
"Nobody told you about the results of your PET scan yet have they?" We
both just shook our heads. "Well the news is very good--- no sign of cancer--
we'll just have to keep an eye on you from now on." We both looked at
each other incredulously. Was he saying what we thought he was saying?
Then he used the remission word. Sure enough he was!

Holy mackeral!!! Success!! It was so unexpected, that we both didn't know
what to do with that information. I went from smiling to laughing to crying
in five minutes. "Wow! wow, wow , wow, wow . . ." That's all I could say.
In Andrew's typical fashion, he just carried on, "Well I got to go teach school
now. . . " We left the office and I kissed him goodbye and I swear
he felt different-- more solid, more real, definitely more permanent.

It was pouring rain that day, but when I got home I immediately went
to the back yard to thank my PVM (personal Virgin Mary) who I had asked
for back up the day before. "Good work" I told her as I petted her hands
and head, "Damn good work."

Sunday, September 19, 2010

live it. . .

I knew after listening to only three chords that it was going to be good.
Andrew had dragged us out to listen to the band Donna the Buffalo who was playing at a
fundraiser in the nearby town of Cazenovia. Seems like we had been just missing
Donna for years. Every time we arrived in our favorite vacation place Ocracoke Island
our friends there would say "Donna Buffalo played here last week-- they were great- you
just missed them." When Andrew saw the banner across the road in Cazenovia that
announced Donna's concert, I knew we would have to go.

Now "dragged" might seem to be strong word to use here, but
to get me out at night after 8 p.m. after a tough week at work
takes a pretty formidable effort. He sold the idea by insisting,
and rightly so, to the group of us 30-50 somethings that we
need to do some of those things we "used to do, but didn't do
anymore"--- like going out and listening to some music.

And that strategy worked. That and of course the fact that you
always humor people who are going through treatments for cancer.
("Lets go up to Alaska tonight to see the Northern lights." -
"Sure Honey, why not. ..)

Nonetheless, I was stifling continuous yawns by the time we got in the car and headed east and the thought that kept running through my head as we wandered through the milling crowd waiting for the band to start was that I'd never stay awake.
But then the band did start. . . and like I said, only three chords in I knew it was going to be great. The crowd immediately started moving irresistably to the rhythm of the six piece band. Andrew turned to me and said with his accent " Its going to be a rocka'" - and a a rocker it was. The band warmed up with a swaying Cajun rythym that got everybody's attention, but by the second song we all could see what they could do.

Now most of my students have heard me wax poetic over the rock and roll of my youth when I teach about the 60's and 70's. They've heard me rant about the amazing Jim Morrison and the Doors and know I keep a poster of him on my office wall (compliments of my beloved sophomore class of 2007). They might even know who the top 5 guitarists of all time are based on my instruction (Hendrix, Santana, Clapton, Knopfler, Vaughn), but they still might not be aware, as most people are not, of my true passion for good rock and roll. That stuff really does it for me. . . and for Andrew too.Its one of the many things we bond about.. . . within minutes we were comparing notes:"They are really tight aren't they? the lead guitarist has the nuance and phrasing of Knopfler". .."yeah
but the narrative rythym of Jerry Garcia." etc., etc.

By song three we were done comparing notes and just swaying to the music -- transported in five
minutes back to what I will call our "wild days." Days we weren't so responsible, weren't so burdened
and weren't so damn serious. The days when when we still worked hard, but we played hard too.
I had forgotten what it felt like to stand in a crowd of people, all dancing, with the taste of bad draft beer in my month and the smell of sweat, patchouli and other exotic substances in the air --- listeningto amazingly good rock and roll. Our kind of what I like to call "physical" rock and roll -- the kind that gets into your bones and stays there-- the kind that makes you break into an irresistable smile when the just right chords are played-- the kind that makes you forget whatever it was you were so concerned about just
minutes before. We hooted, we hollered, we danced and we clapped.

It was amazing fun! the kind of fun we had almost forgotten about and certainly hadn't experienced in a while.

Toward the end of the set the band sent out a dedication to the victims of a bad
accident on they saw on the road on their trip up to the gig. "The best tribute we all
can give to those that we've lost, is to just live life to the fullest," their lead guitarist told us.
"That's our mantra," I thought -- at least we've been talking that talk.
Seems like it took a little Donna the Buffalo to show us how to walk the walk though.

"We should do this more often" A said on the trip home. "Couldn't agree more. . ." I replied.

Just live it. . .

Saturday, September 4, 2010

Just Another Day


O.K. I know i've been very remiss in keeping this blog updated!

I realized the other day that this is because cancer has just become a part of our everyday lives. Going to the doctor, having tests, chemotherapy, just another item on our to-do list. Monday: meeting at 10 a.m., exercise at 11 and take Andrew to get hooked up for his 6th chemo treatment at noon, go back to work, take him home at 3 p.m., cook dinner, watch t.v. go to bed.

Andrew has it figured out that while doing chemo that he can drive until lunchtime on day two; three days in - no dog walking, four days in not much of anything; Two day's after the chemo's done he knows he'll start to feel better. Driving and dog walking on day three. By seven days out he'll be pretty much back to normal. During the most recent rotation through he taught school on day three after treatment. Nobody knew. People all say "Andrew you look so normal, its hard to remember what you are going through." I came home on day two of this session and found him upstairs painting the sunporch. I'm so tired I can barely keep up with my life but he just keeps acting like the Energizer bunny. But I'm not complaining.

Having him be so normal, of course, makes it easy to forget that cancer is in our lives. And everyday we think as little about it as we have to--- and some days its not much at all. These past fews weeks we have been enjoying another "cooling off period." Soon after we got back from vacation he had the PET Scan, endoscopy, and biopsy that verified that the treatment was working. Tumor shrinking, no cancer cells in biopsy--- looking good. Doctor decided two more courses of chemo, which he just completed.

Our doctor also sent us to see another surgeon to see if maybe that might be an option now. But no go on that! The surgery would be very difficult and the results would maim and disfigure him for life. Voice box, swallowing mechanism, windpipe and pretty much everything between the top of the tongue to just below the tumor would have to go. (The thought of Andrew without a voice was far more than I could get my head around.) So we opted not. Especially since even after all that no one could guarantee that it would be a cure.

Chemo now is our only weapon --- and it seems to be doing its job. Next week he'll go back and be retested and we'll know for sure. So in the meantime we'll just keep plugging away: go to work, walk the dogs, make dinner, watch t.v., tend the garden, laugh with friends. . . nothing special going on here ---.but I promise, I'll let you know if there is.

Wednesday, July 21, 2010

Headed in the right direction. . .

So this will be quick.
Andrew went back for his tests this week.
Here's what we have to report.

Tumor is reduced in size by over40%
No signs of cancer anywhere else in the body.

Doctor G is prescribing at least three more rounds of chemo
(Andrew not so excited about this but ready to go).

New talks after that with new surgeons about
the possibility of removing the smaller tumor.

We are headed in the right direction!!!

We are in good spirits.

Thanks all for your prayers and good thoughts. . .
Keep 'em coming!!!!

Monday, July 12, 2010

Healing Time

Vacations, at their best, allow the time to gain perspective. The pushes and pulls of everyday life fall away and simply"being" replaces our usual never ending state of endlessly "becoming." Our hectic daily activities are replaced by more static indulgences such as staring at waves, reading novels, sleeping on the beach and thoughtful meanders. Yeah its good stuff! A friend I vacationed in Mexico with once, told me she could see my face change in a dramatic way, loosing its tension and angst and settling into a far more attractive calm every day we were there. After four weeks of beach and mountains we are looking pretty good!


For the relaxation that we knew we needed we headed to the places that we knew would do it best for us. . .for Andrew it is the beach, and particularly the Ocracoke Island, NC a place he's been going to for nearly 30 years, and the only
spot I've ever seen him be content at just doing nothing. He can sit on the beach for hours just looking at things: the birds, the waves, the shells, the colors and be totally happy.

For me it is the mountains and particularly
Seneca Rocks, WV. There is absolutely nothing that makes me feel as good as hiking up a trail and sitting in the sunshine on a ledge on that crag with like minded friends, enjoying that perpetual present tense that is climbing.


But we don't get to do either the beach or the mountains much any more, so their therapeutic effects were even more pronounced this time; and missed even more.

At one point I thought that nearly four weeks of vacation was pretty indulgent; but when you dealing with stresses like cancer, you have to pull out the big guns. Honestly, as I see it now, four weeks was barely enough. The perspective that vacation has allowed me is that it's just not the cancer,
but three years of transition, moving, new jobs and a
lifetime of work that has worn us both down. And we know we are not the only ones in that boat.

These questions kept coming into my mind, "How do you keep a grip on the present tense? How do you not let the good work that vacations do slip away? How can you do a better job of taking care of yourself and take time for yourself--everyday--not just vacation days?

And those are the questions that frame the spirit of our return home: How can we do this life thing better?

When you are sick, especially having cancer, being well becomes the primary goal of your existence. Every day is about trying to be as healthy as you can. But when you are well (or think you are well) your health and well-being take a back seat.
Work, family obligations, projects, bad habits grab the forefront. And the anxieties that come with them are accepted as the norm not the exception.

We all know that there is something very wrong with that picture, but nonetheless I can already see the importance of my daily walk or exercise being diminished by the importance of reading my email or tending to work related projects. The quiet time in both our heads is being replaced by lists of thing we need to remember to do. The time that was totally our own, no longer is.

. . .or is it?

This week Andrew goes back to be retested to see where he stands --to see if the treatment did any good or if it did not. It seems momentous and I can feel my stress level raising daily thinking about it. The other day when I was out walking I was fretting about this and told myself I might as well brace for the worst and get my head around that. Two or three steps later I had a flash of insight and the profound realization that that was really stupid. What good did imagining the worst (or the best) really do? Would it really make me better prepared for whatever lay ahead? In reality it was just making me more anxious and tainting a perfectly good day. My thoughts were just shaping me, not shaping the outcome of
anything that would happen next week.

How much to we all do this to ourselves?
How do we keep a hold on the more simple, joyful "being" rather than constantly thinking about what's next.
How do we do what is best for us EVERY DAY, not just when we have time for it?

In someways, this poses a far greater challenge than fighting cancer, but like fighting cancer it begins with gaining the understanding of what you are up against. . .

We all know, deep inside, what we need to do. . . we just need to do it. . .
and we need to support each other in doing those things.
So if want to know what you can do for us today--- just go do something for yourself that you ordinarily wouldn't do-- that's fun or healthy or just lazy.
In the end, I am certain it will be good for all of us!

Tuesday, May 18, 2010

One for the Zipper. . .




The news of Mr. Zippy's gentle, but sad, demise hit me hard. We found out that our friend Jim had to part with his beloved cocker spaniel "partner in crime" of 12 years via Facebook as we were driving east on the NY State Thruway headed toward my Dad's. I turned from my iPhone to Andrew and said quietly "Mr. Zippy's gone" . . . and then the tears started coming. . .and coming. . .and coming. . . 50 miles later there were still full body sobs and Andrew and my own pups Sophie and the (newly renamed) Stanley sitting in the back seat were all looking at me with concern.

Now this might seem weird, considering I never met the Zip. But I felt like I knew him nonetheless and sure did know of his relationship with Jim through the numerous pictures and stories about him Jim lovingly shared with us. As dog lovers to dog lover we could relate. And having just put down our beloved lab George last year, I knew what Jim was going through. Oh its so sad and so tough. . .

But I also knew the tears were more. . . Four months of holding my emotions in had just abruptly come to an end. Crying about Mr. Zippy was o.k. --- and the big dam of propriety and holding onself together that had been firmly in place for so long had crumbled.

And I think that was a good thing.

I came out on the other side of it about an hour later with that heightened sense of that makes you especially appreciate the present tense and everything going on in it ---Andrew feeling chipper enough to drive the 3 hour trip and looking good; a gorgeous day; the love of my own pets, my husband and my father now a 1/2 hour away; a break from work---- I rolled down the windows of the car and let my dogs put their heads out in the wind --- ears flapping, noses up--- it was a doggie 21 gun salute for Mr. Zip and a simple reminder of what unqualifed joy and delight looks and feels like!


That's the image I'm going to keep in my mind as we take a six-week vacation from this cancer process. Twelve weeks of grueling treatment is now done! And we don't have to do anything medically related until after July 6 when Andrew will be retested to see how well the treament worked. I am happy to report that he has bounced back amazingly in the past week since his last round of chemo. . . . far better than the time before this. He's looking a little leaner, his hair is a little thinner and swallowing is still tough, but the energy and stamina are back, and when you see him he'll have a hard time believing he's been through what he's been through. It gave us both a great sense of relief as we left the hospital for the last time on Wednesday after he got his feeding tube removed. (Andrew convinced the doctor's this was necessary for full beach enjoyment). Leaving it behind for awhile sure feels great!

So this update is going to be short, because we got some relaxing to do! Goodbye hospitals, doctors, chemo, radiation and hello Richmond, Ocracoke, Seneca Rocks, beach, mountains, fishing, climbing and just being. Look for us as we make our tour of the South in the next few weeks and help us celebrate! Richmond friends we'll be there on June 10 -12 and back again two weeks later on the 28-30. Look for Andrew at the Penny Lane Pub on the 11th watching the England vs. US in the soccer World Cup. We go from there to Ocracoke from June 12 - 27, and then back to Richmond briefly, and then on to Seneca Rocks from June 30 through July 6. Seneca friends who are now scattered all over the place I hope so much we can see you there!
So bye for now. . .I got a margarita I've got to go drink--to honor this beautiful day, my friend's Zeke's birthday, getting this far, feeling this good, and especially Jim and Mr. Zippy. . . .







Wednesday, May 5, 2010

Resilience


Each year spring in Syracuse teaches the lessons of resilience. Compared to Richmond, Virginia, where we lived for many years and where spring just happened in one day or one weekend, Syracuse springs are gargantuan efforts that take weeks to unfold. Our infamous winters in Siberacuse are rough, and while most of us just bundle up and jump into it, nature takes a wicked beating. Things are frozen, covered with pounds of snow, salt and dirt, bent over by strong winds and broken by ice storms and blizzards. The persistence gray of the sky can make you feel less than optimistic. Its hard to believe that anything can come back from this. When the thaw does come, which if eventually does, it leaves behind a barren landscape of mud, dead grass and leafless trees. Very gloomy.

But, then finally spring sneaks in. Subtly at first. You may notice the occasional crocus, a few buds on the trees, the grass turning greener. The leaves on the trees stay in an emergent state so long that it creates interested veils of chartreuse green and orange-red that hang in the air for a week or so. And then one day you notice (like today) that spring is finally fully here. Leaves on all the trees, gardens teaming with spring flowers, grass six inches high and needing a mow. Add three days straight of sunshine and you can't help but feel good.

In the dead of winter it is hard to believe that
this is possible. Resilience is an amazing thing.

We experience it in our own bodies as well. Hair grows back, sunburns fade, scrapes and bruises heal, bones mend, the headache of the hangover fades. . .minor miracles every day.

These past weeks I have seen the miracle of resilience play out in Andrew. As you might have surmised from my last post, things have been rough. Round number 3 of chemo in conjunction with the final radiation treatments really knocked him down. Down as far as I've seen so far. Yes it was great that he could do his treatment at home, but that also meant that I got to see first hand and hourly what the treatment was doing to him. By the time I took him back to the doctor's to get the chemo pump removed (an amazingly small apparatus that fit in a fanny pack-- one of our few comic reliefs was making jokes about him looking like an 1980s tourist) he could barely walk and could talk but sure didn't want to. The nurse that checked him in was perky and kept trying to engage Andrew in witty banter. He never said a word back to her and just fixed her with a murderous stare instead.

In that time period we shifted from him being able to eat anything he wanted, to just soft foods, to blended liquids, to clear liquids, to nothing. It just hurt too damn much to put anything down his throat. The acid reflux was killing him also, so not only did it hurt going down it hurt coming back up. Once again I thank God or whoever for the Fox Soccer channel and his conversations with his brother Neil (made the trip from Sweden to be with us) who provided the only diversions he could handle and got him through the bad days.

But then by a week later, you could see the signs of spring. He started to be able to drink Ensure, and then eat yogurt. Mushy food was back on the menu and by the weekend he was able to eat a hamburger with great relish. The tee shirt and sweat pants were
replaced by button downs and jeans, faced was shaved, hair cut. He began making excursions out to walk the dogs, then to school, then started driving, then started socializing. He ventured out to student crits, the annual S.U. Fashion show, and my faculty's end of year party. And when he started agonizing about which tie to wear to the fashion show and insisted that the buttons on his waistcoat HAD to be changed out from blue to chartreuse green in time to wear it that night --- yep, I knew-- he's back to normal! As sure as the leaves on the trees and flowers in full bloom, spring was here. Although I would have had a hard time believing it possible ten days ago, he's back in full form.

So, I'm going to hold my knowledge and understanding of his resilience in the forefront of my brain as we enter the final round of chemo on Monday.
If cancer is the earthquake or hurricane that enters your life unexpectedly, the treatment is the like the mudslide or tornado that happens in its wake, creating a perfect storm of destruction. Both disease and treatment pound on you from all sides. Its our resilience---of body and mind-- that cures us. And that happens every day, right?




Thursday, April 22, 2010

Angels and Demons

O.K. this one is going out to all you caretakers out there.

You know who you are --the ones that have at some time or still are taking care of someone. And I put this post out there not for a pat on the back because I now officially am one, but to voice my appreciation and to claim my bond with all those others out there doing this wacky, tiring and some-times heart wrenching job.

So this is for everybody who has:

1. Had to stand by and watch a loved one in pain and discomfort and felt like you couldn't do anything about it.

2. Held heads while puking, hands while sleeping, kissed feverish cheeks, brushed hair back from sweating foreheads. Fetched endless numbers of pills, glasses of water, ginger ale, chicken soup, pillows and blankets. Tried to coax someone to eat. . .just a few bites.

3. Watched a once perfectly able person not be able to put his/her socks on, walk to the bathroom, negotiate steps, or sit up for too long.

4. Endured the sharp word and the burst of temper for the smallest reason that comes from the illness but is aimed smack dab at you.

5. Held your tears, fears and temper in until you thought you would burst, letting them out only when you are out of sight walking the dog, in the basement moving the laundry into the dryer, or pretending you are taking a long hot bath.

6. Kept on doing 1-5 although you would love to take a vacation and often fantasize about handing over this whole gig to someone else.

7. Felt no guilt about using all available means to take the edge off, maintain perspective, and keep yourself whole during this experience - whether that be chocolate, red wine, cheezy novels, bad t.v., mindless internet surfing, shopping, excessive exercise, or excessive coach potato-dom.

8. Tried not to spend too much time wondering why - because these things never do make sense.

9. Now has the benefit of understanding what really is important and what is not.

10. Called on God, Buddha, Mohammed, Mother Teresa, Blessed Virgin Mary, Gandhi, Dr. Phil, the Great Oz, Oprah, the Tooth Fairy, Easter Bunny, Santa Claus, and any body else who might be available to just stop this nonsense. . .

We all do these things not just because we have to, but out of love. . . and its a process that make you understand what that word REALLY means.

My father's sister Nell, who was a jewel of a person, fought a battle with skin cancer nearly all her adult life. When she was 79 going on 80 the cancer had finally totally metastasized and she knew it was taking her down. She grabbed both my hands hard one day while I was visiting her, looked me straight in the eye, and with the greatest intensity she could muster said to me "The most important thing in life is love. . .that's really all there is." It sounded overly profound at the time and remember thinking that the cancer was probably making her a little wacky.

But now I have to admit that I think I know what she was talking about.
Yep, now I think she was right. . .

Thursday, April 15, 2010

We are fam-i- ly! or radar lounge. . .

O.K. O.K. - I know! Its been a while. . . sorry. My father always tells me "We'll I always assume that no news is good news." (his gentle way of telling me there's been too much time between phone calls). And for the most part that is true here.

Today we reached a significant milestone --- the last day of radiation. 33 sessions since we started, now finished. Even if we wanted to we wouldn't be able to do this again. It just doesn't work that way. I'd say the timing on this event was just about perfect. Andrew
is at the point where I don't think he could take anymore. His chest and back looks like that of an overzealous Spring Break tanner. Dark dark red brown to almost purple. The throat is really sore and food is having a hard time going down. Yesterday was a liquid only supper and
today was a liquid only day --- and even that hurts a lot. We are stocked up with Ensure in all flavors and that can go in by mouth or feeding tube, so we are prepared to wade through this. (The feeding tube WILL BE the absolutely last resort. . . I can tell you that.)

The doctor says the cooking goes on for two weeks after the treatment stops. Kind of like baking a cake. So who know what next week might feel like. Next week also brings another round of chemo -- and I guess that is not great news in and of itself, but there is good news in this story. The doc says he can do this round and the last round at home!

I can not tell you how happy that makes us, particularly Andrew, who has grown to absolutely loath that time in the hospital no matter how nice the staff is. He went to his doctor's office visit after the last stint with a list a mile long of his complaints: food sucks, smell of food sucks, people wake you up all the time, people ask you stupid questions all the time, sound of shoes in the corridor is excruciating, bad t.v. channels, and most importantly really bad lighting! After he made the demand that only I would be allowed to take out his garbage, Dr. G threw his hands up and said "No problem - we can make this work at home." So Monday a.m. we go down to the doctor's office and they'll hook him up, and in an hour or so they'll fix him up with a backpack of sorts and we'll go home. I'm not sure what happens after that, but we'll find out.

Now ordinarily I'd be a wreck having him at home alone with me having to go to work (at least every now and then!), but another angel is coming to help us through this one, and that angel is my brother-in-law Neil. And I might add he's coming all the way from Sweden to do this!! Neil is one of the few folks that I think Andrew could bare to have staying with us while he is home having chemo, and I am so grateful that he is making this trip. He will be bringing with him the intimate understanding and love he his for his big brother along with the healing and calming influence of his ongoing yogic practice. . . You will be able to tell which house is ours because it will be glowing with good energy. . . and I know this is going to help!

Now I guess one sad thing about leaving the radiation therapy behind us, is leaving all the diverse folks we've met at the treatment center. . . and it's kind of sad to think, we will probably never know how their stories work out.

I know I will continue to worry about Gary (who Andrew refers to as "my guy") someone I emotionally attached myself to (although Gary does know it) one of the first days we were there.

Gary is no bigger than a pint size beer bottle (as my Grandmother Jessie would say). I tower over him at 5' - 4" and I'd guess he weighs no more than 80 pounds. A scraggly beard covers up most of his face and and oversized coke bottle glasses and a worn baseball cap covers the rest.
His daily attire is a flannel shirt--at least 3 sizes too big that hangs to his knees --and jean's blown out at the knees. I swear that when he stands next to Andrew he only comes up to his waist. I noticed right away that Gary always comes by himself, by taxi, and seemed to have no family to support him --- so I've been keeping my eye on him since day one.

And then one day this weird serendipitous event happened: The Trio arrived.

The Trio is an extended family of husband (patient), his wife, and his sister (the names eluded me on this group). Husband and wife are from the North Country somewhere, sister lives locally. Since it such a long way to drive they have to stay at the Ronald McDonald House during the week to come to treatment. He's the guy I mentioned in an earlier post that has the softball size tumor on his leg that they are trying to shrink before surgery -- the guy that kept asking Andrew how he had so much energy. We would talk to the Trio everyday, and by the time they finished treatment we were sharing books, recipes and small talk with them.

But the first day the Trio came in, Gary was also there. The sister says to Gary, "Is that you Gary?" Come to find out the brother and sister are Gary's cousins, except they haven't seen each other in about 20 years. Now one would never guess this because Gary's cousin is the exact opposite of him -- he's tall, he's heavy and he's got a really big face that you can see all of. . . But poof -- just like that! Gary suddenly has family and a mini-reunion of sorts now takes place every day. "How about so and so?" one of asks the other. "Oh, he got divorced and got the cancer -- not doing too well." One day the big cousin looks over mischeviously at little Gary and says "You want to go at it?" Little cousin says back (without hesitating a second) "If that's the way it needs to be. . . ." and then adds " You know what they say the bigger they are the harder they fall." The big guys zips him right back "and the smaller they are the farther they fly." Now this David and Goliath exchange just set the whole waiting room into hysterics for some reason, and I was still laughing when Andrew arrived back from treatment--- who was very disappointed his missed the action. The big guy finished his therapy about two weeks ago, and since then Andrew shakes Gary's hand everyday and asks how he's doing as if to fill in for the vacancy left by the big cousin--Today, Andrew's last day, they shook hands and Andrew wished him good luck. Gary said "You know they didn't think that I was going to make, but I think i am." It it's an interesting band of brothers here. . .

And sisters also --- there was one group of three women who came in for a while--- a deaf older woman, her daughter and her interpreter. . .they sat in a corner and had marvelous laughing and conversation of fluid signing and spoken sentences at the same time-- obviously only they could get the jokes. .

And then the other couple, two older women who I imagine as life time partners; one had a tube in her throat and spoke as people with throat tubes do. She walked out of the treatment room one day holding her radiation mask like a trophy over her head ----the last day of treatment. Their shared joy was palpable and inspiring. They walked out together hand in hand. I couldn't help but tear up.

And then there was the little girl and her mother. Her about 8 years old, bald as a cue ball, with an intravenous flow of something hooked up to her, carted around in her own Hello Kitty backpack. She scrunched down in the chair beside me and demanded of her mom "I want some water." Her mother definitely answered "NO way!" and I was kind of stunned about the idea of her denying this kid anything. "No way" she said, "You're only going to throw it back up!" Then mom looked at me and reported that the kid had drank a whole bottle of ginger ale last night and sure enough threw it all up, and that doctor says that her thirst is typical indication of a tumor in her brain, but they scanned her and there was not tumor in her brain, and that this was the first time they were doing treatment on her that she actually still had a tumor in her body. (I didn't want to ask how many other instances there might have been) This all in one breathe, just tumbling out on top me, in such a nonchalant way. I was fascinated and horrified at the same time. "I want this thing out!!!" demanded the kid about her IV. "I'll make you a deal" the Mom said, " You can get that out if you are a good girl and let them give you the radiation treatment with no fuss." I breathed a big sigh of relief when Andrew came back and we got the hell out of there. . .Wow! "I met those guys before," Andrew told me, "They are rough." I nodded. . "Oh yeah!"

These are just some of the many folks we have met on this leg of the journey and are leaving behind, --- some of the many, who like us came everyday for their regular does of poison laced with hope. We may never see any of them again, or know their fates or outcomes, but we are bonded to these folks by our shared understanding of this particular place, this particular time and this particular circumstance. . . like the cousins who met each other again after twenty years, we are some weird kind of family. . . and I am sure if we see any of them 20 years from now--- just like Gary, we WILL be able to recognize them. . .

Andrew keeps humming that tune from the movie Crazy Heart. . ."I used to be somebody, now I am somebody else." I think that's true for all of us.

He's sitting beside me as I write this and just ask me to add this postscript: "Please tell everyone thanks, who has sent thoughts and messages my way---especially those that I haven't had a chance to get back to yet. . ." In case I've never posted it--his email is ahavenhand@yahoo.com---still checks it every day. . .


Tuesday, March 30, 2010

Halfway There

I believe we are officially halfway there. Radiation treatments over halfway done (only nine left after today). Chemo, two out of four visits to the hospital, done. Halfway is all of the ambivalent place that its designed to be. The glass hall full or half empty discussion comes to mind this week and our mixed emotions characterize our being at this place.

We are thrilled that we have made it to this point, but also understand what still lays in front of us. We are happy, but we are cautious and tired. Things are beginning to hurt, sting, be sore, and hair is (just slightly so far) beginning to fall out. Tempers are shorter. We are still in good spirits, but are more subdued and are giving ourselves more breaks. Just sitting around not saying anything is o.k. Quiet time is richer and more precious than ever. . . and that's probably why its taken me awhile to sit down and make this entry.

Andrew is good. All of you who know him, know that his is strong in body and character --and that is serving him well. Every time we go to radiation we meet this couple from Watertown, who travels all the way here for therapy. The Mr. has a tumor on his calf the size of a baseball that he is grappling with. He always says to Andrew, "How do you do it? How do you have so much energy!" He does seem some days to be the most lively patient in the room.

While he was in the hospital for four days, he still had to go down to the basement for radiation every day. The first day he insisted that he would walk and not go in a wheelchair. All the nurses were flummoxed. "Do we let him walk?" They decided as a group it would be o.k. but that someone had to walk with him just in case. This was the first time any of their patients had done that. He walked every day to radiation. During his first chemo visit he had surgery to get his port and feeding tube installed so he couldn't walk, but I know that from now on being able to walk to radiation while he's in the hospital will be a marker of sorts. . .

Both the radiation and oncology crew are charmed by his accent (of course)so that is in part why he gets away with such things. The radiation crew decided that they wanted Andrew to teach them "English." He quickly obliged by spending part of the day writing a list of English expressions, with their translations, and their phonetic pronunciation. You can hear the strains of " and Bob's your uncle" and "Is thou fettling well" now wafting across the Radiation Therapy floor. . .

Making comparisions is hard not to do. Comparing Andrew with other patients we see. Comparing me with other support people I see. Comparing one day with another. Comparing one hospital stay with another.

This second hospital stay was very different in many ways. First he did not have surgery which really knocked him out the first time and put him bed and in hospital gowns for most of the stay. This time he was determined to wear his own clothes and every day he had his jeans and t-shirt on. (T-shirt slightly modified to fit the tubes going to the chemo port that is in his shoulder). This time he was more determined to get out and about and I would find him sitting on the window sill in the corridor and not always in his room.

Food and food smells went down well at first, but at the end the hospital food grew to be abhorrent and I was bringing him things from the cafeteria and home to entice him.
The changes in his reactions to sound and light were perhaps the most dramatic. He has insisted on each hospital stay that we bring a table lamp from home. "Hospital lighting is awful" he complained when he first found you he'd have to go in. The warm subdued light from that lamp by his bed was about all he could handle by day four. Same for sound. The noise of the nurses and shoes in the hallway became unbearable and he asked me not to text message him because he found the ping of his phone grating. Rustling of newspapers, volume on t.v., furniture leg screeches, the repetitive drip of the I.V. machine --- all almost too much to bear by day four. Rapid movement on movies became too much to watch and caused headaches. The slow motion of black and white movies on AMC became the standard T.V. fare and then nothing at all --- eyes closed, no moving, going into the zone of just passing time.

The incessant drip of the I.V marked the time like the tick of a clock. On Saturday, Day 3, Andrew figured out that the drip was going to slow to let him get out of the hospital by Sunday night. He asked the nurses to see about speeding it up, and they obliged him. By the evening of Day 3 he was up to speed and on schedule for an evening departure. By 6 p.m. Sunday he was counting the milliliters left in the bag and computing the time in minutes until it would be done. His Ukranian nurse, Nada (who speaks five languages) kept coming in to check and and took his impatience and grumpiness in stride. She did everything she could to facilitate him walking out the door as fast as he could, and when the drip finally died she had him ready to go in ten minutes.

We jumped in the car, and I felt like I was breaking someone out of jail. There was a shared feeling of elation of leaving the hospital in the rear view mirror. When we arrived home, I had the fire set in the fireplace, Fox soccer channel tuned in and the home made beef stew he requested all ready for him. The dogs were excited to see him, but calmed down quickly as if they new he couldn't take much more than that. We all settled down to our usual places, and fell into a comfortable silence (without the staccato ping, ping, ping of little drops) and the lovely everydayness of being home. . .

Wednesday, March 24, 2010

My Father's House


Today Andrew returned to the hospital for his second 96 hour round of chemo. He checked in after his radiation treatment and at 8 p.m. this evening he was hooked up to the bag and rolling. Three hours down, 93 left to go. Socks are pale green with white dots. . and he looks good!

This was exactly what my friend Carla said when we visited him this evening. Carla and her husband Paul traveled all the way from Baltimore to help us out with this round. Our dogs are ecstatic as they are receiving lots of love, treats and big walks from Carla while Paul's been busy in the kitchen since he arrived and already whipped a marvelous veggie lasagne that was waiting for us when we got back from the hospital.

"He looks great." Carla said as we were headed to the elevators leaving the oncology ward, but she was also crying. "It's hard to see that (Andrew hooked up), it makes it so real." I knew exactly what she was feeling and the last time I was in exactly that same shape when I left him there for the first time. I hugged her and said "I know." But I wasn't crying this time so I guess that means I'm getting used to this strange routine. Is that weird? I not sure. . .

The difference between our first check in at the hospital and and second was quite striking. The first time we were quiet and hesitant and wondering and tentative. Eyes wide open we were almost afraid to touch anything. This time Andrew strolled in his room and started moving around the furniture to suit him. "Could you help me move this bed over to the left," he asked the nurse as she was trying to take his vital signs. He tilted the bed up to the exact angle he wanted, rearranged the covers and pillows and then was out of the room in the next moment to see which end of the hall had the best views. Definitely we both were a little more comfortable with this.


Our relaxed state was surely a result of our knowing what to expect but also probably a residual from our trip to my father's house this past weekend. We both wanted to take the best advantage of our time before he had to go into the hospital again, particularly since he was feeling so good, and we agreed without much conversation that the best way to do that was by visiting my Dad who lives about three hours away from us in small town in the foothills of the Green Mountains.

We both love visiting my Dad and his house has become quite a refuge for us. This started years ago when when we would travel up from Virginia to visit both he and my Mom (divorced for 17 years, but still
both living in the same very small town.) My Mom, God rest her soul, was quite a planner, and would have a list of things we had to do with her which started the minute we walk through her door. My father, on the other hand, had and continues to have absolutely no expectations of our time. Its do whatever you want to do at Dad's house, on your own time and in your own way. No strings attached. Time at my father's house is down time. Real down time.

This is enhanced by three major features of
his home --- The house he grew up in that has been renovated by him to be the ultimate man cave --- 1. He has things in it that we really enjoy but we are far to cool to buy for ourselves (Lazy Boy
recliners, fuzzy blankets with animal pictures on them);
2.He has food in the refrigerator we enjoy but would never dream of buying or eating at home (sliced pepperoni, apple turnovers, an
d Klondike bars) and 3. he has many things that have not been available for sale since the 1970's but are cool and enjoyable and just plain weird (a turntable with vinyl records, two shelves of very tacky knick knacks).

The dogs love it because there is a big yard, and Andrew loves it because he can sit in a big chair and watch soccer with my Dad
for as long as he likes, usually with a big fire going in the fireplace. I love it because I don't really have to talk to anybody. My Dad and Andrew sit and chat and I sit and read, MY favorite
thing. Its the ultimate kick back place. It also helps that he doesn't have good internet connection and that the valley he lives in is on the edge of AT&T's coverage so our cell phones only marginally
work. No email or phone calls does wonders for the blood pressure!

The enjoyment of going to my Dad's has also been enhanced recently by our finding an authentic fish and chip shop in the next town over. Little Britain's fish and chips are totally up to par to any we've experienced in England, and make for the perfect bulk-it-up meal before chemotherapy treatment. Amazing crispy batter dipped fish, juicy and tender on the inside --- absolutely not health food, but just what the doctor ordered in this case.

We topped off with two strawberry Ta-Ta cupcakes (use your
imagination) from the Crazy Russian Girls bakery just around the
corner. Ah heaven!!!

So we were all pretty mellow and satiated when we got in the car to head back to the 'Cuse on Sunday. It was tough to leave. My Dad hugged Andrew good bye (Something he doesn't really do) and said, "I'm really glad you came, because its a lot better to see you in person and see how you are than to hear about it on the phone." While I guess that was in fact some kind of ending, it sure made for a nice beginning, of this, our fifth week on this journey! Day #29 is looking good. . .



Tuesday, March 16, 2010

Happy Anniversary

Monday, March 15 was our 8th Wedding Anniversary. Still newlyweds many tell us. . . but we've been through a lot in those eight years so its seems like a lot longer---good longer I mean. In actuality we HAVE known each other for over 25 years although we haven't been together that long. Our pasts have intersected many times (the only bar I was ever thrown out of was the Texas Wisconsin border in Richmond, VA and Andrew, who was a bartender there, is the guy who did that---but that's a longer story for another time). I'm sure that contributes to the feeling of longevity. But we both agree, regardless of the real time, we have been soul mates forever.

Our anniversary gift to each other was the fact that Andrew
is feeling well--- really well-- well enough to enjoy a nice dinner at a fancy restaurant, with a promise of a movie later this week, salsa dancing post-treatment and 4th of July in Seneca Rocks.

I am so excited about how good he feels and I think our doctors share that sentiment. "I feel normal" he told me the other day, and I believe him as there are no indicators to make me think otherwise. He's not jogging around the block, but he's active---walking dogs, making fences (see pic), going to school, shopping (buying surprise flowers
for the wife), making dinner -- right now I can hear him outside deconstructing our back porch---but most importantly he's eating like a horse. (note the chocolate tower on the dessert plate) People comment on how good he looks, and they are not just being polite.

The weather is feeding our upbeat mood by turning sunny. All the snow has melted and the smell of spring is in the air. The trees are just starting to bud, and yes, even here in Syracuse (or Siberacuse) the flowers are pushing their heads up out of the ground.

I find that because he is doing so well I am feeling very happy and lighthearted (maybe also because its spring break). With help also from my music therapy (favorites on the iPod this week are Fleet Foxes "Your Protector," Anya Maria "Satellite Heart," and Coldplay "Cemeteries of London" and thank you Carla for that iTunes gift certificate---Can't wait to download!!!!) and my work outs with Frank (OMG) I am in a very good place. I realized that I was actually skipping down the
street the other day (which I attempted to self-document for this purpose, not so well, but you get it--cars driving by, people wondering who that person is skipping while waving her iPhone over her head).

I know Andrew is sharing my upbeat attitude. "Tempus f---ing Fugit" he just proclaimed with gusto to our friend Zeke and the most beautiful baby Thomas who wandered over to visit and watch the fence reconstruction. And this is not a forced enthusiasm. I can tell he really means it.
I am wondering is it endorphins kicking in or just this shared moment of crisis which seems to be putting everything into such acute focus and making the ordinary so extraordinary. Whatever, we are enjoying it.

Today at radiation, one of the patient's who has recently joined us in the waiting room on a regular basis (male, 50 ish), looked over at Andrew and said "Do you mind if I ask you what kind yours is." That's all it took for the cone of silence that keeps you separated from each other to fall away and for an open and poignant conversation about chances, diagnosis, fears, and determination to take its place.
It was stunning and powerful. Andrew touched that guy gently on the shoulder when we left and he told him "You'll be O.K." My brave and compassionate husband of 8 years and my soul mate of forever just being the person that he is. . .

We do know that this temporary blissful state is probably the calm before the storm but we are almost half way through radiation (zap # 12 of 33) and after next weeks hospital visit will be 1/2 way through chemo. Both Doctor G and H say just keep on eating and get ready to feel bad and next week when he goes in for the second round of chemo, that will probably be the turning point. So we know it is going to get tougher, but the 'tude is good, the socks are argyle and this week is a good one!


Monday, March 8, 2010

Week #3 (Close enough) - Talking to the Virgin Mary and Other Magical Thinking


Yes, folks that is a picture of Andrew washing his car this weekend. You can see our dog Moe's reaction, which echoes my own, "What the hell is he doing?" He slipped out the back door and started before I could say anything -- and since he feels good---what can I say.


"Its all about attitude!" he told me this morning as we getting ready for our first official once-a-week visit with our onconologist, Dr. G. Couldn't agree with him more.

We love Dr. G. and he'd been on vacation since our visit to him about a month ago, so we were looking forward to seeing him. Dr. G is young, hip, and one of the most empathetic and thorough of our many health care providers and we were anxious to hear what he'd have to say about where we are now. Andrew isn't doing any driving so I did the taxi driver thing and got us both to the office safely with Andrew only telling me how to drive once. (pretty good)
Then we both went into our waiting room
routines. Andrew reads a magazine and I watch the other people come and go, almost always couples, and speculate on which one of the couple is the sick one. I often only find out if I am right when they call them back to see the doctor (cause they always call only the patient by name). This of course is also a comparative study - me trying to imagine what we are going to look like in eight weeks. But, then of course, there is nobody else there wearing striped socks. . so it is hard to compare.


We finally get called back, and A gets weighed
(only lost 2 pounds), blood pressure is lower (which is good)
and he's got no complaints except some blistering around the lips. Dr. G says this is normal and he's pleased about how good Andrew is looking and feeling (must be the socks). Unlike our hotshot surgeon in Rochester who should have told us all this, he explains in detail why surgery was not a good option (removal of voice box and the swallowing mechanism would have been required, yikes!!). Then he lays it on us. Because we are not doing surgery we have to do FOUR rounds of chemo instead of two; each 96 hours straight, each 30 days apart. And then we will redo all tests to see if the mission is accomplished sometime in June. I have to say that took us back a bit . . . but we took it in stride. There's no getting off the flight was you are flying across the ocean. . .you know what I mean. To quote my hub again, "Its all about attitude!"

Now, I myself am willing to rely on other kinds of support as well . . and as many different kinds as I can get. For example, once a day, while I'm walking my dogs I try to visit the Virgin Mary who lives around the corner from us. She has a stone house that I find very cool (actually she probably finds it most cool also in the winter, as I don't think she's got heat there). As a "recovering Catholic," as my friend Sandy and I used fondly call ourselves, I am well versed and trained in the art of magical thinking. Some may see her as just
a ceramic statue in a groovy hand made stone vault, but for me she's a link back to the strong religious background of my youth and the mystery of belief. Its a little hard to explain this about myself, since I haven't been to Mass in years or practiced Catholicism in decades, but this shrine has a strong pull on me. Its probably also the reason I collect rosary beads, which I never use as directed, but that I seem to need to have nonetheless. I have some that were my grandmother's, my mother's, some from Ireland, and some that I don't have a clue where they came from. I love how they feel, how they are worn through use, and what they project. Whenever I get on a plane I always take a set with me, and when my cousin's kid joined the Marines at age 17 (our only family member in the military) I gave up my beautiful ebony ones that were my grandfather's (blessed by Pope John 23) as I was sure that they would help protect him from harm. I will put a set in Andrew's suitcase the next time he goes to the hospital. He won't know they are there, but that's o.k. The beads emit the same feeling I get from the Virgin Mary. And so regardless that I might look like a wack job, I stop to talk to her on my daily turn around the block. . .Hey, it doesn't hurt. . .


Many of you have sent us your version of magical thinking. . . warm, good, positive energy; glowing light, prayers, hugs, best wishes, and jokes. We just want you to know that they are all working! With your support and a good word from the Blessed Virgin Mary around the corner we are sure to make it through this o.k. Chemo, Scheemo. . .it's all about attitude.

Love ya. . .















Friday, March 5, 2010

Week #2 - A return to normalcy

I've been teaching students for years about the emotional difference between something that's horizontal and something that's vertical, but its amazing to see that difference played out in Andrew's actions and demeanour. Having him up and out of hospital bed without any tubes hanging out of him, walking around in street clothes has made an amazing difference. Except for a little tiredness, and the fact that he isn't driving, things seem almost normal. We are all much happier. He's spending his day's talking to friends and family on the phone, and catching up on email and the Fox Soccer Channel. So expect to hear from him, if you already haven't. . .

He was even able to bear a whirlwind but intense visit by my Uncle Wade, Aunt Sandy and two of my cousin's kids on Tuesday. I had bought them tickets for a Syracuse game at Christmas time, thinking it would be a great idea to get them to come see us. Of course we didn't know then how our scenario would change. On the day of their visit, I arrived home to find the table set for dinner and our guests fixed up with drinks, sitting around talking about the differences between English and American Soccer. Wow, so normal. I kept looking for signs of fatigue or discomfort (because my aunt can be a little intense sometimes!) but they never materialized. . . He made it through a family visit without a blink --- now that's a test!

So this week we are just doing radiation every weekday at 11 a.m. That usually takes 15 to 30 minutes a visit -- not too bad. And two of those visits were cancelled this week bec
ause the super high tech amazing machine that they been using on him broke down (now that's a little unnerving--- Andrew likes to say the rubber band broke in it). This thing is a combo CAT scan and "radiater." The put him in and it takes pictures from over 50 different view points of the tumor, then they roll him out and calibrate it to just hit the tumor, and roll him back it for the radiation. Pretty amazing stuff (when its working. .. ) the machine should be back up and running today and we should be back on schedule for treatment. . .Except for this-- week 2 has been running pretty smooth-- for him.

My other patient, our dog Sophie, who got bit by another dog, seems to be faring worse than he is. Every time her wound we begin to heal she would scratch it open again and
make it look far worse than it was originally. When Andrew came home from the hospital and saw it he almost had a heart attack. Since I had to go off to work, he was insistent that he would walk her to the vets (about 1/2 a mile away). This was our first major "discussion" about the limits of his activities. I felt like I was talking to my father who is 80 years old and who I can't seem to keep off his roof. (totally reconstructed his chimney by
himself two years ago. . .) We compromised in that I would drive him over and he would walk back. The anxiety was incredible, like letting your kid walk to school for the first time. My insistence on regular mobile updates, irritated him, but he did it. Dog and owner arrived home with no incident and neither seemed the worse for wear. It seemed to be much harder on me than them, actually. Mostly importantly after a third visit to the vet they FINALLY decided to put a damn bandage on the thing. (Now there's a brilliant idea!) So Sophie is now is sporting a dapper red bandage, which only partially bugs the hell out of her, and seems to be working. . .

I have to say the best part of this week (beside having Andrew upright and at home; well actually there are two best parts, #2 coming up in a minute) is that I haven't had to cook. Friends and neighbors have flooded our house with goodies (Amy's spiced beef and squash soup, Jen's chicken pot pie, Barre's chili, Jeff's macaroni and cheese. . . ooo la la). We are eating high on the hog and all I have to do is microwave. Thank you all for that. Its been delicious.

Second best, is my visits with my personal trainer, Frank. Now somewhere in this process I got the idea in my head that that in order for me to make it through this and be as much help as I can to Andrew I have to be strong and stay strong. . .experience has shown me that when I'm physically strong I'm stronger mentally and well, as far as I could see, there is no way this flabby ass, middle age body was going to make it through this one without some help. So its been a two prong attack to improve mind and body.

Mind through my iPod and Happy Light. I had forgotten how soothing it was to listen to music! The theme on the Pod is tunes that soothe. Now oddly for me that's a great range from Muse''s "Super Massive Black Hole" to the opera, but it sure does work. You see me walking around with the ear buds in all the time now, something very unusual for me as I generally really do like to hear where I'm going. So please send me suggestions for new tunes--any new
tunes. The Happy Light is a marvelous invention. 10,000 Lux of bright natural spectrum light designed to "lift the spirits, sharpen concentration, and improve energy levels." And i'll be damned if it doesn't. A must for the constant grey skies of Syracuse, New York.

But best of all is Frank. Frank is  totally solid. There's not one bit of him that isn't solid, including his personality and his heart. Frank can size you up in a second and he can tell that I have a mind that's totally willing, but a body that is somewhat lagging behind. This doesn't mean he goes easy on me, he doesn't, but he knows just where to go and when to stop. Well, almost when to stop. The other day just as we were getting to the final set of bicep curls, I could feel the wave of nausea and the flickering of my vision. "Holy Crap, I thought, "I'm going to either barf or faint on Frank!"--- neither acceptable in my mind. It was a dilemna, do I admit my weakness and stop, and just risk it and try to muscle on. Decision was made for me when the second wave came through that took me down to the seated position. "Frank, I think I'm going to have to take a break." He was great, took the weights out of my hand, gave me the sharp and knowing Frank evaluation look, and ran for the glucose tablets for me.

Five minutes later I was somewhat back to normal and had somehow manage not to vomit. A real achievement! Odd thing is that I can't wait to get back to it. I love this getting stronger thing. . .By week 8 of this journey I should be formidable!!!

So bye for now and love to all! thanks for all the support! It also makes us strong!

P.S. this is not me in the bathing suit (although I wish it was) but my ex student and friend Kate Oliver (triathlete extraordinaire) making a statement in Andrew's behalf. . . Love ya Kate!

Monday, March 1, 2010

Day # 4-1/2 - 5 -- And a 1, and a 2, lets a take the A train. ..

I'm back -- finally! Rough couple days of busy-ness with lots to report.

Top on my list that I have to tell you all that I do believe this treatment has seriously impacted Andrew's brain. I walked in yesterday and was greeted by an in depth description and blow by blow of the Syracuse/Villanova game the night before. ( In case you missed it, Syracuse basketball team creamed Villanova in front of a rabid and loud Orange crowd of over 30,000 on Saturday) I was pretty scared. . . this from a man who has previously only had disparaging remarks for the sport of basketball, will not watch it with my father who is a fan, and has reported that he "would rather watch paint dry" than do so (Also has made fun of people wearing all Orange gear, although I am afraid to admit that) I quickly scanned the I.V. bags to see if there was any sign of orange in them as surely some strange had happened. I sat with polite smile on my face, gently nodding head in agreement while he gave me a complete post game wrap up with reports of stunning ball work and cool moves. He had an obvious command of all the names of the players (they all start with J except Andy Rautins, who he complimented for his control of the game).

WHO ARE YOU AND WHAT HAVE YOU DONE WITH MY HUSBAND??

Other aberrant behavior to report: A sudden obsession for the sport of Curling. Did you see that Switzerland vs. Sweden match? It was a real barnburner, huh! Wow!
Such action. He was mesmerized for hours on that one. The New England Journal of Medicine is sure to do their next issue on the healing power of watching grown men be really serious about sliding rocks around on ice and doing that annoying little sweeping stuff. A modern miracle!

Perhaps most disturbing is the new delight in the Lawrence Welk Show. I wasn't half way home before I got a text message on that one. "Lawrence Welk is on!!!" Do I turn around and go back to see if he was o.k. or just keep driving and pretend nothing odd is happening? What was the attraction? The Lennon sisters. Bobby and Barbara's dancing? The outfits?--probably the outfits. . .

Whatever, all these thing seem to all be doing to the trick. Except for a little grumpiness about being woken up all the time, he is emerging for the 96 hour chemo drip in good spirits. Not a lot of discomfort to report, still eating (although he's lost his taste for coffee), and able to take the dogs for a walk today after I sprung him out of the hospital this afternoon. So far, so good.

Better than me who somehow manage to piss-0ff the parking attendant at the hospital garage the the other night because I threw my license at her (its a long story involving not enough money and her terrible attitude and my short temper). She called in her 300 pound supervisor to protect her from me. (I'm not kidding). Who stood here being very big and saying nothing, while we finished our "transaction." It was a classic scene with cars piling up behind me. Myself doing everything to not jump out of the car and pull all of her red hair out of her head. Luckily police were not called. "Yes officer, I did assault her with my license, all 2 ounces of it. Yes it was a close call as it almost hit her body. Yes officer I promise I will not throw my license at anyone again--- even if they are particularly awful people."

I'll sneak in here a picture of Andrew from the hospital that I promised not to post -- but I will anyway because its funny --- which seems to be the theme of this night's entry. A sense of humor really does help keep it all in perspective and we seem to be keeping ours for the most part.

Andrew will be home now until he returns to the hospital in three weeks for another 96 hours of chemo, but he will get radiation every day for 7 more weeks. Thanks for all your emails and greetings that keep flowing in. . . He should starting checking his email tomorrow. . .if he can tear himself way from the Lawrence Welk Show.

Saturday, February 27, 2010

Day #3-1/2 - The Kindness of Friends and Neighbors

O.K. So I have to admit up front that I'm probably going to be a slacker blogger. Last night after getting home from the hospital -- and I was very tired -- it was "Harry Potter and the Half-Blood Prince" or blog, and Harry won--although I only made it half way through the movie.

So about that snow I was talking about. Well it just kept on through the night dumping multiple inches. When I took the dogs out they were up to their necks, which delighted Moe who just starting spring ing through the air instead of walking,
and was o.k. with Sophie too who now was able to walk in the trail he was blazing. Shoveling out the car, however was a little daunting, with about three feet of snow all around it.

For a moment I had a sense of panic that I wouldn't be able to get to the hospital, so I charged out there with broom and shovel and started going at it. About ten minutes in I was joined by my neighbor Kevin with his broom and shovel, and we worked at it together for about a half
hour until we were at least able to see the wheels. He said to me "You go in and have a cup of tea, and get ready to go, I'll finish this." So I did. And emerged an hour later to find my totally clean car moved to the other side of the road waiting for me. . .

Meanwhile, Zeke called. His lovely wife Karen, my friend and co-conspirator in acts of novelistic indulgence, had baked brownies for Andrew. Now I have to tell you that Karen brownies are not normal brownies. Karen's brownies are acts of love and caring in and of them selves. Made from scratch with REAL chocolate, each bite just puts you in a state of bliss and the minute they reach your line of vision they make you drool. Perfect for the man who has been starved for two days because of pre-op and post-op rules! Zeke tells me he will walk them through the snow to make sure that I have them and not get stuck on their street.

In my clean car with brownies in hand, I finally make it to the hospital. "He's sleepy today," the nurse whispered to me as I walked in the room. More than sleepy, he was out cold and didn't even hear me. So I just sat down and watched him sleep for a while. Now my friends with children have all mentioned to me the wonder of watching their kids sleep --- well, now i think I get it. Its a very peaceful experience to watch that rise and fall of a loved one's chest in a contented and oblivious-to-the-world sleep. It sure does make everything seem o.k. . . I was tempted to take photo for the blog but I knew he'd kill me.

When he woke up he was in good spirits but struggling a a queasy stomach because he hadn't eaten in more than 24 hours. The staff was totally doting on him (They have all obviously fallen for the accent) and checking on him all the time, adjusting medicines to try to make him feel better. In typical Andrew fashion, he could tell me that the night nurse has three children
ages 8, 10 and 14, and that she was his favorite because she didn't wake him up. 3 p.m. was the magic hour that he would be able to eat again, and he said his main man, Jeremy, the day nurse was scheduled to whip him up something as soon as the clock ticked over. I left him to sleep it off.

Later when I came back that evening he was much more perky and talkative. "Did you eat?" I asked. "Yes, some fish that's never seen the sea and some potatoes that have never seen the earth." I thought at first that this was a drug induced existentialist statement, but then realized he was just commenting on the quality of the food. "I'm eating everything they give me" he explained (whether he likes it or not -- a good thing). Left him at about nine contently watching the Olympics. I asked him if he wanted company tomorrow, i.e. other visitors.
He thought for awhile and said "No, I just want to sleep. They don't give you enough time to sleep around here." So there's the word on that.

When I came home to check on the dogs between visits, I could see that the snow shoveling
fairy had obviously been around. This time I recognized the work of my other neighbor Joseph, the ex-Marine. The military precision of the edges was amazing, and not a drop of snow on all my steps, sidewalks and paths, front and back of the house. A work of art! And I was so grateful! As I walked up the stairs my neighbor Matt across the street came out to yell over, "Just let us know if we can help you. We can take care of your dogs for you." Found soup on my doorstep from my other neighbor Barre. Like manna from heaven compared to the diet of cold cereal and hospital food of the past few days. . . All this kindness is almost overwhelming. . .Sam and Jenny taking care of my dogs; Ann exhausted still finding time to visit; Suzanne and Tracey protecting me and warding off the masses so they don't bug me; Denise's texts, Carla's calls, postcards, and massage gift certificates! The tons of emails, and phone calls from friends, students, ex-students, and colleagues all over the place! I thank you all!!!

I've been telling my students in my art history lectures for years that it is our ability to rationalize that historically distinguishes us as human beings, but I believe now that that is far surpassed by our ability to be kind. . . this is truly what makes us special. ..

So, I leave for now (since Moe is begging me for his walk) with the work of the soon-to-be famous artist Max Wysocki (age 5)and his marvelous double portrait "Andrew and Lucinda, holding hands about to go down a slide. in the sunshine." --- a most accurate portrayal of where we are.



Thursday, February 25, 2010

Day #2 - Telling stories. . .


Day #2 started with snow. . .and snow. . .and snow and more snow. Syracuse University actually cancelled classes in the afternoon which says a lot, although its didn't seem that bad. Walked the dogs through the winter wonderland and then headed to the office to take care of a little business or at least pretend I was working.

When I finally arrived at the hospital around 1:30 I found an empty bed
with a note that said "Gone hiking, be back soon."
The nurses filled me in that he was in surgery having his chemo port put into his chest and his feeding tube put in the belly. (Just in case the snack kitchen does lose its appeal).
I hunkered down in the the sofa to wait -- drinking coffee, grading a few design history exams, and having a great e-chat with my brother in law in Sweden. About an hour later they wheeled
him in as he traded jokes with the two nurses. He was chipper but in a bit of pain from the surgery, so they administered a little morphine, which cut it and put him in the mode of telling me stories in a soft voice that I found very gentle and soothing.

I heard in detail about his day which include tales of his first radiation treatment, with the groovy mask, find ing out that this radiation doctor was a singer in a professional choral group; detailed descriptions of them shoving some kind of tube down his nose and his surgery that happened only under local anesthetic so he could hear the blow by blow ( and still enjoy telling the story), but best of all he relayed to me in details of a letter he wrote to an old classmate of his in Leeds who had authored a story about one his favorite teachers Patrick Oliver who had just died. I heard his letter line by line about this man he so loved and revered -- a guy who at their first meeting he believed to be a janitor (not his portfolio reviewer) because he was so dirty and straggly and pushing a broom in the studio -- who then shocked him when he sat down to start discussing his work with him. It was lovely to hear the stories of this man who feed him doses of passion for art, philosophy, Flan O'Brien and long nights drinking in the pub; who so obviously shaped my husband in so many ways. Andrew can tell a good story and I love listening to them, especially those about his days in art school at Cardiff and Leeds. I so wished I had a tape recorder.

We spent an hour or so in this special place of his memories and then I had to leave him to go take care of the dogs and let him sleep. It was hard to go with him all hooked up with the chemo bag dripping, but he was peaceful and smiling as his eyes drooped and he fell into a nice snooze.

And it still is snowing. . .

Day #1


We got the phone call around 11:30 that Andrew's room at the Upstate Hospital Hilton would be ready at 12:30. Really --- when we got to the room we thought we were in a resort. Brand new room to himself with all kinds of good stuff. The weighing, and measuring, testing and questioning began. Andrew's eyes got wide when our lovely nurse Kristen, showed him the pantry down the hall with all the goodies for anytime snacking -- ice cream, yogurt, juice cereal, pudding. One of the key objectives in this course of treatment is to keep you eating. ..

By 4:30 they had him settled in and hooked up to his first IV with fluids to "get the kidneys" going in preparation for chemo and strict orders to ring every time he peed so they could measure the amount.
(Sounds like there was a lot of peeing going on last night, all night long)



I left him to go feed and walk the dogs. When I arrived home our sweet girl dog Sophie was acting weird and didn't want to go walking. A quick inspection revealed she had ripped a golf ball size piece of fur out of her neck and it was raw and bleeding. Piled both dogs in the car (1-1/2 year old honey lab, Moe, and 10 year old Sophie) and head to the vet for a quick look-see. Turns out that cousin Georgies's dog Lucy HAD made contact in the little brouhaha they had at my father's house over the weekend and Soph had a gruesome puncture wound at the site that was filled in with hair so I couldn't see it. OUCH!!!

OK. So walk and administer drugs to dogs, leave them both, hoping that injured dog won't scratch her wound and healthy dog won't piss her off by licking it, and run back to hospital to check on the patient. Patient is now comfy in the PJs and expessing the correct attitude for the first round of chemo. . .

which arrived at approximately 11:30 that evening, thus starting the 96 hour marathon. Left him watching the Olympics, extremely disappointed that the hospital does not provide Fox Soccer Channel, with strict instructions to tape the UEFA cup soccer match that evening.

Thus ends Day #1.