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. . .