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.

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!!!!

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!

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. . . .

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?

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. . .

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. . .