Chapter Twenty Nine – December 6, 2007 (A.C.) After Chemo

Do you ever wonder what it is that wakes us from a deep sleep at 2:00 a.m.? Do you know that feeling of terror, mixed with unrest, mixed with sadness, mixed with a general urgency to be elsewhere…. Cozy under the covers just moments before and suddenly that feeling is gone, replaced with a body that demands movement. Maybe I’m thinking about traveling to conferences this week, or surgery next week to replace the tissue expanders, maybe I’m thinking about work and how easy it can be to love old people and how hard it is to lose them even when I know they lived wonderful lives….I wonder about my sleeplessness, but I’ve just decided there is no explanation that’s going to come to me. At least not this morning, so I’m up and moving……though towards what I can’t tell you and for what I don’t know………

Do you know what I liked about the Cancer? I liked that for 10 continuous months I gave myself permission to take a break. It’s true. I checked out. Stress related to parenting, work, relationships, life in general… I placed all of it in a separate room and I walked away from it. It was in the same house…. I could see it from where I was, feel its presence and every now and then I would walk into that room, and look around, survey what I was missing and walk back out again. I let myself sit……. in a room in my head, by myself for months and I did nothing but concentrate on staying alive. I suppose any sort of crisis is like that… when the crap hits the fan, depending on the severity of the situation, all else falls away until we manage our way through it. It’s rather selfish I suppose, but it’s true…And now….now I am well, the cancer gone, the chemo done and I am standing in a room swirling with chaos. A messy, twisted, complicated, painful, joyful, loved filled busy, busy, busy space and I will tell you, as crazy as it sounds that there are times that I miss the selfish solitude that the cancer afforded me.

Oh my!……I am listening to some new amazing music and I wish one of my kids would wake up so I could have an excuse to dance with them, in my bath robe, hair askew. Wake up…. Wake up little people! Why is it that we think of the very best qualities of our children while they are asleep? My son told me yesterday that I was “hot.” He actually said that. We were watching T.V and some gorgeous creature came on the screen and without meaning to he blurted: “She’s so hot!” When he realized he said it out loud AND he was sitting next to his mother, he turned beet red. I laughed and told him he was right. She was “hot”, “smoking hot” for that matter. But then he said. “Mom, she’s not as hot as you are though. No one is.” Here is why I’m bothering to tell you this….not because it’s resembles truth in any form. But because I wanted to share with all of you that to someone else, I am an entire world. To my little boy I am the most stunning creature on the planet and the enormity of that fills my heart with so much joy that tears come to my eyes every time I allow myself to think about it. That feeling, my friends, is enough to make me wish him awake even when he is soundly sleeping, my beautiful, beautiful little boy.

He’s worried about global warming. Did I tell you that? My cancer has given my sons already predisposed tendency towards being anxiety ridden a healthy dose of steroids. He is having “anxiety issues” since my last hospitalization and it kills me that I caused that. Anyhoo- he won’t say: “Mom I’m really worried that you’re going to die.” Instead he falls to the ground crying about global warming. Sigh. Hmmm… What to do, what to do what to do? For now lots of hugs and squeezes and honestly, a few exasperated: “Are you serious? Are we really freaking out about the diminishing polar ice caps and fading Ozone now? When we are supposed to be getting ready for school, WHILE looking for basketball gear, WHILE finishing breakfast, WHILE locating your homework, WHILE searching for my scarf that your sister used yesterday as a blankie for one of her babies? Seriously? We are going to freak about global warming right now? Seriously?”
Have I mentioned that my parenting skills are sometimes really, really, below par?

Oh, and since we’re on the subject of my children and how my cancer has probably tarnished them for life, my daughter had a play date this weekend that is probably going to require some damage control for the other participant. She was playing doctor with her friend and when I went to check on them in the bathroom this is what I heard: “Okay, Meghan, now you are the doctor and my dolly is the nurse and this toothbrush is the shot. Oh! Hi Mom! Guess what! Meghan is my doctor and I have breast cancer and am having surgery and will have scribbles (scars) just like you.”
It seems like now is a good time to drop the F- bomb. I won’t because I just found out that hundreds of people that I don’t know are reading this which freaks me out a little… I don’t want to offend the general public and since most of you don’t know me, the F-bomb seems a little shocking…. But for those of you who do know and love me, you KNOW exactly what the little bubble above my head read as I turned and walked out of the bathroom WITHOUT addressing her comment because I am a big, fat, weeny and I honestly didn’t know what to say. What I actually said out loud was: “Davy! Joe! Where in God’s name is the cocktail that someone was supposed to be making me?”

I am sitting here next to my twinkling tree (darling pink dolly star in place) and I am thinking I should go upstairs and wake them both and tell them something profound something that will make the breast cancer in both of their worlds go away. I won’t…… they’ll be up soon enough…….though I wish I would because the stars tonight are incredible. I wish it was warmer because if it was I would wake everyone in the house and wrap them in blankets and take them out under the stars like we used to do when the kids were smaller. Sleeping under star filled skys….. I suppose as the years go by they will look at those moments less as an adventure and more as a nuisance. There goes that damn “growing up” issue I have with childhood.

Do you know what inspired me today? (Besides, the twinkling lights -Dear Lord! I love this time of year! All of the sudden the glitter that I choose to toss around in my every day happenings becomes very “oh so appropriate” and I can pencil myself less on the tacky side of the page and more on the “festive” side.) I became inspired tonight by a breath taking sky and the realization that there can still be solitude even in a world that has walked past the cancer. Today, when I felt Life’s torrential waves slamming up against me and it felt as though it was hard to catch my breath, that I might literally hyperventilate. I thought about the cancer and the solitude it gave me and I decided that for today anyway, I will stop trying to hope, pray, and worry all things in that chaotic room to be okay: relationships, kids, jobs and health….I have no idea whether it’s all going to be okay and there is very little of any of that I can actually control…..So for today… I will just be grateful that I am not actively dying, that chemotherapy is not on my list of things to endure and that if I look straight ahead and let the chaos fall away, I see me, standing alone in a room, looking out a window at the most amazing sky

Chapter Twenty Eight – November 6, 2007 A.C (After Chemo)

My son recently told me that I am beginning to abuse the cancer card. I’ll let you be the judge of that. So far I have discovered two perks that come with cancer:
1) People are nicer to you when you tell them you have cancer.
2) The caloric value of Twinkies and Ho-Ho’s seems less significant since the chances of actually dropping dead of a fat ass vs. cancer are significantly reduced.
Anyhoo – as most of you already know, I employ perk #1 as much as humanly possible.

Recently my daughter who was in a VERY foul mood told her brother that she hated him. She actually said those words:
“I hate you Shawn.”
In her defense she was tired and hungry and stressed and KNOWING this he decided to “poke the bear”. As I have said to him before. He is not “special needs” so he UNDERSTANDS the whole action/consequence scenario. Therefore, should he attempt to “poke the bear”,“wake the beast”, or knowingly jeopardize his well being with regards to his sister then I am not interested in helping him glue the pieces of his shattered psyche back together after she nails him. Which she does, trust me… my daughter is a scrapper and she does not take crap from anyone. Anyhoo – she was gritchy and he knew it and attempted to tease her anyway. When he wouldn’t cease and desist she brought out the big guns and told him she hated him.
The thing is, “Hate” is not a word we use in our house. I DETEST it. I don’t want any of you to think I’m getting high and mighty because I am the first to admit that I am a lousy Catholic and pitiful in my Patriotic duties. There are whole pieces of the U.S. constitution that I do not think apply to me and a couple of the Commandments that I think God possibly threw on the list just to have a round number. Seriously, avoiding murder I have down… the Lord’s name in vain thing is still what I like to consider a work in progress. However, I can feel proud of the fact that though I am lousy at some of those things I am GREAT about drawing the line at “Hate”. My children have been raised to know better. So Campbell dropped the “H” bomb and mommy pulled the car over and did the whole body swivel thing on the side of Tongass Avenue in the middle of a rain storm. After I delivered my best “WE DO NOT…….” spiel she responded in a very calm and matter of fact voice.
“That goes for you too Mom.”
“Oh My…. Little Girl, someone is feeling VERY, VERY brave.”
But I decided that there was no point in attempting to deal with the situation until she had slept, eaten, and mommy had called in reinforcements (little soldiers in the Sande household that I lovingly refer to as G&T’s).
Later when she had apologized to both of us and we were all cuddled together on the couch I told them in my most serious voice that we all needed to work on treating each other better and that Hate was never an acceptable word, and besides they HAD to be especially nice to me on account of the cancer.
To which my son responded: “Mom! You can’t keep using cancer forever you know. I think you’re beginning to abuse the cancer privilege.”
When did cancer stop becoming a curse and become a privilege? I have to admit that I understand where he gets the perception. After all, as I discovered this month, I have officially become the recipient of the trendiest, most well accessorized disease on the flippin’ planet. Unlike colon cancer, or stomach cancer, my cancer comes with designer brands and fancy pink ribbons. And my disease is the proud owner of not just a day, or a week, BUT an ENTIRE month which is dedicated towards a national campaign to help raise awareness. I wonder about the awareness thing though. I mean, the people who have it and their loved ones are already painfully aware of it and the people who don’t are probably sick of hearing about it. Honestly, all of it makes me squirm a bit and I can’t help but try to avert my eyes when faced with the pink displays and attempt to scan past the magazine titles that shriek: Breast Cancer: A National Epidemic. The disease that is killing women at an alarming rate.
Dear God. I think I would avoid that shit even if I didn’t have what seems to be the trendiest disease of all time. Well, at least there is that… I’m trendy. I can don the pink ribbons and pink sweaters and pink hats and feel like I’m with the “in” crowd. Finally. I’ve been waiting to be “in” since middle school. I am officially seated at the table with the cool kids. So there’s that I guess.
What about other people with chronic diseases? Do their diseases also get a day, a week, or even an entire month? Do they get a pretty ribbon? If you’ve read these chapters then you know that my mind retreats to warped realities when bored or stressed. So in one of my Vincent Van Gogh moments I decided to create an entire campaign in my head for less desirable diseases like Leprosy or STD’s… Is Crabs a disease or just an irritating condition? How about a Crabs Awareness Campaign? I found myself giggling over the prospect of orange ribbons and little crabbie pins with Swarovski crystals. A Ralph Lauren line dedicated to the Prevention of Crabs…. Instead of a Pink Pony they could have a jockey riding a crab or even better, a jockey riding a pony being chased by crabs. I know, I know….not funny.

I suppose I am abusing the cancer card a bit. I suppose my flip, joking response to this whole ordeal has been because I am still attempting to hide from the fact that I had cancer this year. If I take the smile off my face and put the laughter where it belongs then all that’s left is the sadness, and darkness and fear I feel when I realize that some of the ladies I sat next to in chemo won’t live to see Christmas and they don’t love their families any less than I love mine.

I was apologizing to someone I work with this week about the flip manner in which I joke about the cancer and he responded that it was okay… that he was glad I could find humor during the fight. I told him that I was still just so entrenched in denial that I hadn’t gotten to the point where I could be angry yet. I told him in some ways that I was afraid that if I started crying I may never stop, not just for my sadness, for the sacrifices my children and husband, my best friend, my family has made, but for all of the other women out there. For those diagnosed, for those about to be diagnosed, for those who didn’t survive or won’t survive and what all of that must feel like for their children, for their families….I told him I’m afraid if I stop making jokes and allow myself to feel all of it that I’ll start crying and never stop or that I’ll get so mad that I’ll stay that way and never laugh again. He told me that he understood that and if I could hang on to the laughter that I should because his wife died of breast cancer 7 years ago and it wasn’t because they didn’t try hard enough to save her or because they didn’t do everything right… they did… but she died anyway and he said he was still angry, every single day.
I have to tell you… I was not prepared to hear that story. Like all the magazines and talks shows I have been editing this month… I have also bypassed those individuals who could perhaps present a different reality than I am prepared to deal with. So this one snuck by me and before I could divert the bomb it hit me in the face and I felt the air get sucked out of my body.
But as I turned the conversation over in my head that evening and felt the beginnings of real fear I decided to stop turning it, to put it away and to just focus on what I could handle. Today in Anchorage I watched the sun rise above the most beautiful mountains, I watched the cityscape from way up high and enjoyed the view that reminded me of past spectacular memories, I saw leaves dancing in the street, I held my nephew and I made funny faces and he smiled, I bought a skinny tall mocha just like I used to do when I was healthy and though I am not at a place yet where it tastes good, at least the smell doesn’t turn my stomach any more and I could just enjoy the warmth of it in my fingers and the thought that from the outside standing on the street in the middle of this beautiful city wearing Betsey and holding my coffee I look like me.
And…I have news! Progress of sorts… Some amazing little helper bee in Anchorage has created a blog site for me. I don’t know what that means yet but I know this blessed soul has spent time away from her own chitlin’s to create a home for my ramblings in cyber-space. I have a vague understanding that I can now post these chapters there instead of e mailing them out as I had no intention of pestering those of you who have had enough of these and me…and yet there are those of you who still want more…….so the solution as near as I can tell anyway is: http://www.loggingcampgirl.blogspot.com/ . And there we will be, my chapters, past, present, and future…in our own little cyber forest filled with dresses, and glitter, and beautiful shoes, and laughing children and cake with pink flowers, and dollies with new clothes and red balloons and rubber boots, surrounded by these beautiful souls…dancing… to the most incredible music. Yep…come and find me there… if you’d like…. http://www.loggingcampgirl.blogspot.com/.
Love to all of you

Chapters 21-27

Chapter Twenty One – Take Two – August 18, 2007

I wrote a chapter early last week, to get a jump on it…. But when I went to send it out on Friday I realized that it no longer reflected what I wanted to say for the week….interesting how that happens a lot now. Indecisive, neurotic…… either way… what I find most important to say on a Monday is now almost completely invalid on Friday. Is the world spinning faster now, changing from black to white and back again, upside down and right side up all within a breath, a blink, a sigh?
As far as an update in the land of chemo, I am learning to get used to the new processes that come with less than desired counts and find myself surfing between critically low and normal and back again. Ahhhh, the miracles of modern medicine… I am choosing to stop focusing on the frustration that comes with new processes and instead am choosing to focus on the fact that at the moment my body is responding to the medicine which now appears to be a staple in my week… more injections, more labs, more side effects… but its working so I’m not complaining.
The humility that I wrote about in the first few chapters is now a regular visitor in my world. I fall down a lot, literally. Falling down. On the ground. I’m only telling you that so if I do it in front you that you are forewarned and I would appreciate it if you pretend you didn’t notice. I’ve never been a clumsy person so this is an interesting way to go through life. On the ground… surrounded by all the things that I was once carrying. I realize that when I do it I scare the kids so I am trying to keep my lack of grace to a bare minimum. I try not to think of it as a betrayal on the part of my body, but more as a “modified version” of my former self… there are times now where I am just tired… balance and energy did not require attention in the past, they do now… with every step.
So I have a joke for you, sort of. “What does it take to get a gallon of milk from chemo –brain mommy?” Well, it takes two children reminding mommy for days and days, one e mail from a spouse, two reminder phone calls, three trips to the grocery store with “Milk” on the list and two attempts to get it in the door. Honestly, my kids are downstairs eating cereal with milk that was left on the front seat of my car (overnight) for the second time this week. I am choosing to look at this as humorous and hope that it won’t kill them. Today my entire purpose for living and my goal is to remember milk on the way to work, remember it on the way to the store, remember it in the store, remember it when I get home and remember it all the way to the refrigerator. Now when I see those F-ing t-shirts I’ll be inclined to slap someone. “Got Milk?” We don’t… but if the Sande children are lucky and if God is done toying with me, then possibly tonight. That’s funny isn’t it? Or sad? Funny or Sad? That’s my life, funny or sad? I’ll pick funny…because the other option seems kind of pitiful. Yep… definitely funny.
All of my challenges are frustrating… but minor in comparison to the tragedies that our little community continues to be hammered by. I keep trying to turn all of it in my very foggy head. I don’t think the real question is how do we survive it, but maybe, how we choose to do so with renewal. If we are all being completely honest with each other then we realize that it does not take a hero to survive an accident or endure illness. We walk down the only road placed before us. But I do think it takes courage and strength and grace and bravery to choose to weather the current crisis without the bitterness, or sadness, or heartbreak that might otherwise fill our spaces. It seems like between illness and catastrophe the people around us have had their fair share of suffering lately and it just keeps coming. I am beginning to think that we are now in an age group where tragedy happens regularly or we just run with a very unlucky group of friends and family. Looking out across the horizon I see a lot of pain and it hurts me to know that so many of the people we love continue to face struggles… I feel powerless in my ability to help them and to ease their suffering…and it makes me think about recovery…. There’s and mine… from where we’ve been… the places where blind comfort end and suffering begins… where, or how do we begin again? And how do we do it in a way that reflects who we still want to be instead of reflecting the fear that we really feel? What if it happens again? What if it comes back? What if we fail? What if we are not who we hoped to be?
One of my residents told me once that the challenge to moving into the Pioneers’ Home was not that it was a bad place or that she was not accepting of the fact that she was old. She said that it was just that she hoped to never have to cross that bridge. She knew the bridge was out there, she just didn’t want to ever get on it. I asked her what we were going to do. At the time it was my job as the social worker to move her into the home and to be honest we were running out of time, she needed to move, but I could see her pain.
“What should we do, Peggy?”
She took my hand and said: “Time, dear…… the only solution to this problem is time.”
I thought about that and to be honest couldn’t see how another week would change the situation but I bought her as many days as I could and we fudged as much as the system would allow us and by the time Peggy came into Home she was ready to cross the bridge. I always respected her for that… both her ability to articulate her pain and her ability to recover, and renew…When she crossed the bridge she did so without bitterness and I wondered how.
When the world comes to a shuttering halt and we realize we are standing on a bridge that we hoped to never cross, how do we learn the lesson and continue on with grace? How do we place one foot in front of the other and cross the bridge without looking back wishing for what can never be recovered? Instead, how do we choose to look forward, past the bridge….to a place we never knew we would be? I wonder if we choose to let go of the emotions that come with regret, if the place past the bridge is somehow better because it’s from those places that we learn the wisdom, the compassion, the strength and the forgiveness that we find so beautiful in others….I wonder.

Love to all of you…..j

Julie, insomnia strikes again, and she writes, and writes and writes…

Chapter Twenty Two – August 31, 2007

So I have another joke for you.. sort of: “When you’re in a bath tub with a five year old, how do you know when it’s time to get out?”
Campbell was in the tub with me this morning. It used to be something we loved to do together and then without realizing it I stopped getting in with her. I think I told myself I was trying to protect her but what I was really doing was trying to protect myself. Kids are honest and I think I was afraid of her honesty when she saw my scars. But when I was finally brave enough to let her see them her only observation was: “Mom, why do your breasts have scribbles now and mine don’t?” I love that. To my daughter the scars are scribbles. Someone took a red crayon and scribbled on me. That’s all. Nothing broken or damaged or painful… just a little scribble, as if God colored outside the lines.
Anyway, this morning I was enjoying my time with her in the tub. I was playing with her toes and marveling at the fact that they look like my toes but they’re teeny tiny. She has a mole on one of them that she’s secretly very proud of. She thinks it makes her cuter. She’s right.
But she said something to me that made me laugh and I thought this would be good information to pass along to all of you in case you were unsure of when to pull the plug on bath time with a five year old.
“Mom, sometimes when you’re in the bath tub and you’re playing with your mermaid dolly and you’re thinking about your dolly and then about your day and you’re thinking and thinking… sometimes you don’t know that your tummy kind of hurts because you have to go pee… and sometimes you start to pee in the bath tub without even knowing you’re doing it. Isn’t that funny?”
As I stood to get out of the tub I replied: “Hypothetically speaking of course dear heart, that is funny.”
Thank God for the humor in my life because this week I can’t help but think about how I feel like I am straddling a fence, one foot on the side of the living and one foot on the side of the dying. Sounds dramatic I know but there are moments when I feel more like I am dying than living and it sucks. I think it is dangerous ground to no longer remember what it feels like to feel good. Luckily for me the feeling is short lived and continues to be pushed aside by the land of the living and all the people who reside there and who love me enough to give me a little tug. It’s better on that side. Trust me.
I’m struggling this week with the concept of maturity. With regards to the big “C” it’s been interesting how our assessment of my blood counts have less to do with the numbers and more to do with evaluating whether the cells are mature or immature. I’ve never considered that before but now I am told that the immature cells don’t count. They’re there, but not of use to my body so they are somehow invalid. I feel sorry for them… What’s so great about maturity anyway? I just thought it was interesting timing because I keep turning the mature vs. immature question in my head as my kids continue to grow and attempt to out distance me. What is so great about being old enough to think you know the answers or at least old enough to ask the scary questions?
Shawn Patrick asked his dad about Santa Claus earlier this month. Actually he made a prepared statement to his father which was something like: “Dad, I know that Santa is not real and here is why.”
When Trevor told me that I sputtered and said: “I sure as hell hope you had a come back.”
Trevor’s response was both dejected and defensive: “What was I supposed to say? He had all the facts.”
“Tell me that you did not just kill Santa Claus and thereby eliminate magic in our household forever. Tell me you pulled something out of your rear.”
“I’m telling you he had all the facts! AND WHAT WAS I SUPPOSED TO SAY?”
“You were supposed to say that those facts though logical had nothing what so ever to do with the spirit of Christmas and that whether the logical people in this world care to admit it or not that we are surrounded by magic every day and that magic is felt at Christmas in every moment. And YES Virginia! For F-sake there is a Santa Claus!.”
“Oh….. well….that would have been helpful at the time but he caught me off guard and all I came up with was: ’Son, your right… but if your tell your sister I’m going to beat the crap out of you.’
So I festered for a day or too, feeling down about the fact that he’s nine, growing up AND the fact that Santa Claus just dropped dead of a big fat coronary right there on our front steps and no one else seemed to notice.
Did I tell you guys that my boy turned 9 this week. I have a nine year old. This birthday, makes me feel proud because he is such a smart, genuinely kind hearted boy, but it also makes me feel a little more alone as I realize that as he ages he is not walking towards me, but away from me. As I think of him as a chubby 9 month old in footy pajamas I wish that I knew then what I know now about how quickly children grow up. Shawn Patrick’s independence is a good thing and I know it, but as a mom…. I do wish for more moments on the couch where I could have held him in his pajamas for just a little longer, memorized a little more, squeezed his diapered bottom and sniffed his little neck… just a few more minutes before he began to walk away.
Anyway – shortly after the Santa Claus debacle. My daughter confronted me in the pantry as I was turning all the soup can labels in one direction…. Yes, I do that when the rest of my world seems out of control. “Organizing the pantry” is really code for: “Julie’s neurotic and obsessive compulsive tendencies have kicked in because she feels helpless that the rest of her world is careening out of control.” So there I was, happy as a clam at low tide when my daughter came into the pantry and dropped this bomb: “Mom, you say fairies are real and that they live in the woods and that I can’t see them because they fly away when people come near them but I don’t believe you and I don’t think fairies are real anymore.”

Two of God’s most delightful Fairies

What is it with everyone hopping on the “mature” band wagon this summer? Cancer, Santa’s dead… if you can’t have faith in a fairy… what the fuck is the point anyway. (My apologies for the language but as most of you know, I was raised in a logging camp AND as I have stated before, there are some instances where only the F- word will do, and this was one of them.)
I was watching a documentary about this woman with cancer this week. She said that she felt like life was about learning. I agree. And I think if life is about learning then cancer is a pretty amazing teacher. And I have to admit that my kids aren’t the only ones who are growing up in our house. First I should tell you that I have a secret. Yep, a scary factoid about myself that only a few of you know. Brace yourself and sit down. Here goes…..I don’t like people touching me. I’m serious. I don’t like it and I hide it from most of you but I don’t like people in my personal spaces…. I never have. I don’t know if it’s an Asian thing but the only reason I feel like it’s not completely abnormal is because my sister is exactly the same way. We laugh about it because all of our lives when people would hug us we would look over them at each other, cringing and mouthing: “They’re touching me! They’re touching me!” It is something we joke about as adults because when a hug is warranted from each other we whisper in the others ear as we’re hugging: “She’s touching me.” That is sister code for: “This is really uncomfortable but I love you.” I was thinking about it a lot this week. Why I’m like that…what’s the aversion to allowing people in? What feels so wrong about allowing people in to my personal spaces. Maybe something about control, maybe something about intimacy, something about letting others love me…. Something… but what I found interesting this week was my realization that over the course of my illness my opinion on intimacy has changed considerably. Proof of that came to me this week when I was feeling rather crummy and I received a hug that I really, really wished would last longer, that was tighter, that I could somehow fall into. I let someone in and it felt really comforting and I thought maybe growing up is not about searching UNTIL we find ourselves. Maybe growing up is just realizing you never reach a place in time that stops. Where you have found yourself and therefore discover happiness. Maybe growing up is just realizing that life keeps offering us lessons and we keep changing because of it and there is a chance, a choice… to be happy in that moment whether you understand the lesson or not.
My inspiration for the week? The lessons life offers as we grow up, a body that can still dance simply because it wills itself to, a laughing baby, engagement stories, and a hug….. Yes, you’re touching me…..and I love it.

Love to all of you………j

Teresa and Julie 1976?

Chapter Twenty Three – September 5, 2007

It’s three o’clock in the morning the day after chemo. The side effects have not proven to be as consistent as I had hoped they would be but the one thing I can count on besides the vomiting and hair loss is the insomnia that follows my I.V chemo…..I’m loopy and tired shortly after leaving the hospital but progressively through the night I become more awake so that by the time the little ones are tucked in for good I am ready to get up and go somewhere……if only we had a Target and it was open at 3:00 a.m or even a Borders Books or just one of you little soldiers who I knew was awake at this ungodly hour and just dying for some 3:00 a.m chit chat. Oh Wells…(as my sister’s Japanese travel agent would say).
As far as my cancer update goes, I just finished treatment number 21 for which I received a resounding ovation from my chemo nurses and chemo partner. So I am hoping for an end date in the middle of October. I missed one treatment last month because my counts were too low to consider it but haven’t had to miss anymore since we changed the frequency of my neupogen injections. And Thank God! my practioner’s agreed that I don’t have to make up the missing week though if I miss more in the future I’m afraid I will. The end date may be a bit of a moving target but we’re getting there, me and all of my silent and not so silent little soldiers who are marching with me. Just five more spins around this stinking Merry Go Round before God lets me off the hook and I attempt to stand again, head spinning and knees buckling but standing all the same.
There are two thoughts that keep bumping into each other in the foggy wasteland of my head this week. The first is that I have somehow given my daughter the misguided notion that brave girls don’t cry. It came to my attention the other day when on her VERY first day of soccer season at her VERY first game she was nailed in the face by a ball…Hard.
“Oh dear” I leaned over and said to my friend standing next to me. “That is what we call a career ending injury in our house.”
I scooped my little person into my arms and held her as she wailed and wailed, all the while ALSO managing to gripe about the injustice of the world. “Why!? WHY!? Why did she have to kick it so hard? Why did I have my face in the way? Why does it hurt so much? When is it going to stop? This is the worst day, the worst day, THE WORST DAY of my entire life. AND.. I .. MEAN..IT!”
Alrighty then…Gymnastics anyone?
But afterwards, a band aid, an ice pack, and candy bar later when humor had been restored and she was rocking out to her new favorite song “I’m a Barbie Girl”. (What can I say? Mommy’s bringing out the vintage trash from iTunes). Anyhoo, happy she was in the back of the car and I told her that I thought she had acted very brave during the game. She replied very matter of factly: “No I wasn’t. I wasn’t brave at all. I cried like a big baby. If I had been brave I would have held in my tears like you do, but I couldn’t… they all came spilling out on the field and now I’m not brave at all.”
Hmmmm……..As a parent do any of the rest of you ever wish for a do over? Not just of a conversation, but of the whole parenting experience?
I gave her some half witted response that wasn’t really a response at all and then changed the subject. I can’t really get it out of my head though because I keep thinking about how over the course of this year I have come to realize that I have given my children the wrong message about many things in life. The fact that I did so unwittingly and with the best of intentions does not mitigate the fact that I have clearly screwed the pooch on this one.
Here’s the message I think I have been giving my kids until this year. I think I’ve been demonstrating that mommy’s do everything for everyone all the time. They don’t get sick or tired and they don’t say no. They sacrifice themselves for the people they love and they do it because they care and they do it without cost to themselves and mommy’s never, never fall down, they never falter, they never fail, and they never break.
Mommy’s say they’re happy even on the days when they can’t remember what happiness feels like and they cover sadness and call it bravery.
I thought of it again yesterday when I couldn’t stop. Crying that is… something sad happened so I had every reason too… and I was sitting in my car crying about it and thinking I should stop and I should clean up my messy face so that no one would ever know that I was sad. And then I thought about my little girl and my big boy and wondered when and why I started to try so hard to cover up my feelings and where I have been stuffing them over the years. Now I think maybe it’s more important to teach them that mommy’s hearts break too and so will theirs and I think tears are a good thing… proof that we really do feel the things that matter most in life: beautiful sunsets, a spectacular song, the feeling of rain on your face, the hand of a friend, nature at its finest, unkind words, the despair of impossible situations, the fear of leaving those you love behind, and the heart break of missing those that you’ve lost. Tears are proof that we have feelings, that we have felt something and allowed it or them to move us. Proof not that we lack bravery but that we are finally brave enough to show the people around us that we are not perfect and the world moves us just as it should.
So I didn’t come up with a good comeback in the car but someday maybe she’ll read this and know that her mommy thinks that sometimes when we are happy or injured or just hurt inside that tears will come and mommy thinks that’s a good thing. I would tell her myself but I honestly can’t picture a time between now and age 18 when she will be silent long enough for me to get a word in edge wise.
So the second thought that I can’t get out of my head this week has to do with “killing time.” I hate that saying. I have always hated it. I think it’s foolish and unremarkable and I don’t like it. But I can’t get it out my head this week and here’s why. I had this dream that seemed really, really long and in the dream, I died. I mean, I really died. That whole notion that you never actually die in your dreams is horse- pucky because I had a dream the other night where I was D-E-A-D and it seemed very R-E-A-L. The good news is that after I got over the initial… “Oh crap… I’m dead who’s going to remember to pick up the dry cleaning next week or the dentist appointments in February?”.. and had the chance to look around I discovered that dead is not a bad place to be. If you know me well then you know that I am a voyeur at heart and the whole concept of being able to float through cedar trees while still feeling them and smelling them and buzzing around all of you while you enjoy the privacy of your own homes was positively entertaining. Plus there was the whole God thing which felt pretty fantastic. I don’t want to ruin it for any of you so I’ll stop there, also, I suppose it could have just been the drugs that I was on that particular day. I hope not because it really was a spectacular place and it’s somewhere I hope to return in the future. The part of the dream that frightened me is the part where I was just about to die and I knew that I was falling off the cliff and nothing could slow me down and that I would die… that part sucked because the only thing that stuck in my head and was repeated over and over was “you killed so much time.” It haunted me and still haunts me. I don’t want to think that I have made choices in my life or continue to do so in which I am filling days but not living in them. Side-stepping moments or even worse, years so that I don’t have to live through them but around them. I suppose that requires bravery too. As we think about all of the interactions in our lives: relationships, career choices, family, friendships, hobbies, obligations, responsibilities…. Am I killing time? Are you?

Shawn Patrick adventuring at the Sande Cabin

This week I had the joy of holding my children at the cabin, for long periods of time, and watched them in the creek calling out to one another with new discovery’s. I watched the most spectacular sunset and felt Fall’s cooling air on my cheek and neck. Though I couldn’t sleep in the night, I had the gift of listening to the raindrops on the roof top and God knows how I love that. You know what really speaks to me in the Fall? Smoke coming from chimneys… the one I was looking at this week was covered with moss and ferns and is positively charming. My inspiration for the week has been the moments that have moved me to tears. The moments that I have been brave enough to allow myself to feel something so much that I couldn’t hide my emotions…. I am inspired by the hope that through my days, through all of the years ahead that I will remember this part of my journey through the darker days of cancer and remember how much I learned and how much I gained, brave girls do cry and killing time is unacceptable. If I live the rest of my life remembering those things then maybe I could face the edge of the cliff and never feel regret.

Love to all of you…..j

Campbell Rose and Mommy

Chapter Twenty Four – September 15, 2007

I have four more treatments left….only three more in Ketchikan as my last one will be at Swedish. I am happy to report that the Neupogen continues to be doing its job so I have been able to continue treatment. I have to say though that you know your spirit has officially been broken by the chemo monster when it forces you to beg. This week I came down with a little virus which sent my counts in the wrong direction. All the reasons why I couldn’t proceed with the treatment made sense but I heard myself asking for it anyway and when I was waiting for the results of the final CBC which would give us the definitive “Yes” or “No” answer I heard myself praying. It wasn’t my normal “Dear God, so listen, I know you’re busy but it would be nice if……” Instead it was a pleading, passionate “Dear God, Please……Please let my counts be high enough to have treatment tomorrow. Please let me finish this.” It was startling because I didn’t recognize the voice as my own. In the game of Cancer, in the battle with Chemo you know the little monster has scored when you not only have to endure the treatment but it makes you beg for it first.
I’ve been thinking a lot about change. And the ways each of us change and continue to change throughout our lives. This week I was thinking about it in part because of my daughter’s fascination with bugs which has come to an all time fevered pitch. I’m not talking about stuffed animals or stickers or plastic toys, I am talking about the real thing. My daughter gets fired up about bugs. She likes to find them and collect them, she likes to catch them in her little fingers and let them crawl on her. This week she called me at the office to tell me that she needed me to pick her up later than I had planned because she had managed to catch two caterpillars on her Grandma’s front deck, which she planned to keep as pets and she needed more time because they were going to the library to find out what kind of caterpillars they were. “But Grandma said I can’t let them crawl around on my belly anymore because that gives her the heebie-jeebies.”
What I think is interesting about it is that I used to have the same fascination with creepy crawlies and I forgot about it until this week when I heard myself telling my children how I used to do the same thing. Then it all came back to me… finding the shadiest corner of the yard which offered the biggest, furriest spiders, grasshoppers from the field next door in a glass jar under my bed, fuzzy caterpillars from the cool bricks of my old school building in a pencil box under my desk. I remember when I lived out in the logging camps I loved being in the woods so much that I would lay down under the cedar trees and cover myself with moss and feel all of the smallest creatures of the forest crawling over me. I realize as I write this that all of you reading it are having a hard time attempting to put that information up against the person that you now know and have it make sense because I admit, it simply does not stack up.
Obviously, times, they have changed. I hate bugs now. I hate, hate, hate them…. What I find most interesting is that I don’t know WHEN I changed. I don’t know when my deep love for them turned to indifference, and then dislike and finally contempt but it did. I’ve been thinking about change in the grand slam, slap upside the head, turn your world upside down kind of way. Rapid and forced not as teeny, tiny, voluntary steps away from who you were before. But now I realize change can come that way too…slowly over time, immeasurable increments until years later you look back and realize that you no longer recognize the person you were before and you no longer have any ability to relate to those feelings other than hearing yourself say: “Mommy used to like them too.”
I suppose my feelings about cancer have been like that. My original contempt for the disease has over time and in ways that I couldn’t see turned to indifference, more alarming than that, is the realization that the indifference has turned to a strange familiarity and now I find myself afraid to give it up.
The change in me is stark and drastic when I think back to the very beginning. How at first I tried to will the moment it was found away. I wouldn’t say the word. I wouldn’t look you in the eye when discussing the lump. I wouldn’t admit that I was sick. I wouldn’t even admit that it was cancer, long after it was spelled out clearly by the five physicians who now all considered me a patient. I found myself saying things like “a little bit of something like cancer.” I never even gave the people I loved most the opportunity to cry with me about it because I never actually sat them all down and told them I had the disease. Instead, I told them all individually and in different ways but I held them and the disease at arms length, never wanting to embrace it or let them embrace me because if I did then I would have to admit what I couldn’t. All of you have watched me struggle through this process as I have at times tried to pretend I could side step the club and never have to be one of “those” people. I pictured myself twisting and fighting through the worst of the processes, pinned down by an ugly bully. But as I have written these Chapters I have discovered all the ways it has been making me ask the questions of myself that I know I would never have been brave enough to ask before and because of that I have felt something close to gratitude and maybe even affection for the teacher who has at times seemed cruel.
So now, a month away from being done, I am preparing to put it all away…. finish the process and fill my last prescriptions, schedule my last appointments, and write my last chapters. I think about it like a dress that I struggled with but finally agreed to wear and now I’ve been wearing it for so long it seems like its part of me and I think about letting it fall away and I am scared of what you will all see underneath it. Because even though I can’t wait for the discomfort and the fear and the medications and the pain to be finished I can’t help but admit that the cancer has given me a reason to stay in touch with all of you and has motivated me to think and change, and grow and learn and without it I wonder who I will be. And I wonder whether any of you will care to hear what I have to say when it is just me again… just me.
You know what I love about today? I love the weather in all of its indecisive, moody ways. As I sit here curled up in my chair it has changed from bright sunshine to pouring buckets. It’s raining so hard right now that the noise is distracting and from way up here I can look down and see gray sheets of rain drops pouring through the trees. I consider this “weather with an attitude” and I love it. When I was younger and required far less make up I would go outside on days like this and stretch my arms out and point my face towards the sky and adore the feeling of rain on my face and wind in my hair. Why don’t I do that more?
Sitting here I was thinking about my inspiration for the week and trying to think back through my days and all of my good moments. What I came up with was extraordinary. That’s my inspiration for the week: “extraordinary.” I like that word and I don’t use it enough. I also like “fantastic”, I like “fabulous”, and I love “spectacular” but I have decided that “extraordinary” is a word that I need to use more in my vocabulary. There was a day last week when I had whole hours where I felt like myself again… I wore my Saturday skirt and my flip flops and tooled around town doing simple things but I found myself feeling good, and smiling and laughing and at the end of the day I couldn’t help but feel a little proud of the extraordinary ways in which my body does still work. It was just another “Thank God for that moment” moment like others I have written about before, but I just thought about it again tonight and I realized that there are moments in our days when the world feels so good that we can’t recall a time in our lives that was any better than that moment and I think that is extraordinary. Here’s to all of you….my friends, and to all of our extraordinary moments to come.
Love you…j

Chapter Twenty Five – September 29, 2007

Last Tuesday I felt so good I ran around the Lake. Not my wimpy, chemo-induced, sad run…. but the run of a healthy person. On Thursday I felt so bad I went to the hospital and stayed there.
On Tuesday I celebrated the sound of my shoes pounding the muddy trail and I heard myself telling cancer that it didn’t scare me anymore. On Thursday as I lay shivering on a gurney I heard myself telling cancer that I quit.
Life just continues to demonstrate to me how quickly everything can be turned on its side. Our days seem less like a journey down a gentle sloped path and more like a rapid series of blind corners. “Nope, didn’t see that one coming, or that one, or that one.” By design I suppose that’s a good thing. If we could see some of the crap that life is planning to throw our way then it would be tempting to duck and cover and stay in that position for the rest of our lives.
But still, maybe ducking and covering for a little while is acceptable.
Did you know I keep all of your e mails? I do, I print them out and put them behind the corresponding Chapter and keep them in a binder next to my chair. On my worst days I read the entire thing. Somehow I find comfort and sanity in your words and mine. So thank you for that. One of you sent me a note that said I was your hero. It was nice and well meaning I think but I discounted it immediately, maybe because there has never been a time in my life where I have felt less worthy of that statement. Never a time where my flaws have been more evident, my weaknesses exposed, my sense of direction more in question though I appreciated the kind words and the sentiment. As I lay in that strange bed, surrounded by beeping monitors, looking out the window at a world that was passing me by, I thought about how I wanted to quit. In my heart I knew deep down that you were wrong. I am no ones hero.
But as I thought about it I wondered what a hero is to me. I used to think that a hero was perfect. The people in my life that I admired the most were people who I thought were flawless. I was thinking about it this week as I read a controversial article in Newsweek Magazine about Mother Teresa. Honestly, I only read part of the article because I put the stinking magazine somewhere in the middle of reading it and cannot remember for the life of me where in the hell it is now. Seriously. I’ve looked everywhere. Chalk it up to another chemo moment. I purchased the magazine with the understanding that it was controversial and that maybe the author’s agenda was to pose doubt about her character. I disregarded all of that because I couldn’t think of anything anyone could print that would cause me to doubt her or her status as my hero.
It’s weird how we make assumptions about people when we decide we may want to be more like them. When they turn out to be less than we thought they were, why does their imperfection feel so disappointing? Obviously, it has less to do with them and more to do with us. But still, after I read the article I kept thinking about her. What she went through serving an entire lifetime for the people of a God who she felt at times had left her for decades. She spoke of feeling “nothing”, and her despair and doubt were evident. Honestly, I found myself irritated by it. I had this image of her in my brain before I started reading. This image of how she sacrificed her ENTIRE life for others. Not just in theory but in REALITY, she wasn’t just moved by the plight of others suffering. She felt it and then she gave herself to them. I looked up to her because she was perfect in her devotion to them. Perfect…. I thought she was perfect and she was my hero because of her perfect faith, her perfect devotion, her perfect sacrifice. But once I started reading the article her flaws were visible and I felt disappointed. She was no longer a hero, she was just a human. I kept thinking about it all week though and as I let the myth of her perfection go, the realization that the hero was really just a human was somehow liberating for me and I found myself loving her more for it. For the first time I wondered if the people we put on pedestals aren’t perfect and are really humans just like us and make mistakes and fail and falter and doubt then we are all capable of being somebody’s hero and I am captivated by the limitlessness of those possibilities.
I was inspired this week by a quote from Victor Robinson. He wrote: “no happiness equals the joy of finding a heart that understands.”
The thing is…..these blind corners, sharp turns that life offers us…. Sometimes it seems like we are waiting…..and waiting….. and waiting….. for relief, for comfort, for peace and instead of that we get more…. more corners, more sharp edges, and we begin to doubt. But then we stand next to another soul who understands, who loves us perhaps despite us, who accepts the imperfection, who sees the flaws and thinks they admire us anyway. Even in a year where Life seems to have offered the most tumultuous ride, I believe Mr. Robinson had it right. From a hospital bed covered in layers of physical discomfort and emotional drought the prospect of having people in my life who look at me and really see me, past me, through me, and into me is a relief and provides me joy in a time that would otherwise seem without light. So this week I am inspired by finding you, or your finding me and I am inspired by the imperfect hero’s in my life and the possibility that someday I might be one too.

Love to all of you…j

Chapter Twenty Six – October 7 2007

This week my struggle has been one of faith. For my fellow Catholic/Lutheran’s don’t worry, I am not struggling with God vs. Buddha or Judaism vs. Christianity, nothing quite so deep. Just a general questioning of the concept of faith, whether it’s faith in love, or faith in God, faith in friendship, or faith in the general well being of the universe… at some point there is doubt and fear that what we believed in is not real and when that happens the universe shifts a little and we find ourselves unsettled. What we need most is proof then, a sign, that what we have convinced ourselves to doubt is in fact, really there.
I started thinking about it because I’ve been worried about my babies. Those poor little buggers started crying when I went to the hospital and they haven’t stopped. It’s an exaggeration I suppose, but it feels that way to me. My kids, generally speaking, are highly operational, low maintenance, and rational beings. I appreciated that about them and I expect it, because to be honest, I am not highly evolved enough as a parent to handle anything other than children who for the most part behave like mini-adults. So this week, when my children fell apart I found myself at a complete loss.
Little things make them cry now: the bus, sports, their friends, teasing, hugging, homework…. They cry, and they can’t stop crying. I can’t hold them or negotiate with them enough to make the tears go away. The site of me in a hospital bed has somehow traumatized my kiddos and the real question for me now is how in the hell can I restore their faith in me.
Thankfully the end (of chemo) is near. I hope to only have two more treatments which means, only 18 more tablets of Cytoxan (oral chemo), 4 more injections of Neupogen, and two more I.V. treatments of rat poison. But as hard as I try to get excited about those numbers, it is really hard to drag any more fight out of this body. I know it sounds pitiful, especially now when I’m so close, but honestly, it’s like asking someone to get excited about the fact that they are going to be beaten to a bloody pulp for the 24th time. I know rationally that I should get excited and feel something close to relief….but I don’t. I really just don’t have it in me.
Timing is everything, don’t you think? I do. I believe that. So this weekend, I had planned a celebration in honor of finishing the rat poison. But it didn’t work out because of my delay due to illness and I decided at the last moment to postpone the party to November when I hope to feel better and will in fact, be done. But my “Seattle Family” had planned to come and surprise me for the party and decided just to come anyway… so there I was, sitting down to dinner with my best friend when in walks my “family” from Seattle. Buddy, is a friend of ours who we consider to be “citified” and who is honest about his lack of zeal towards cabins, boating, and bugs. Though I have tried to tempt him over the years to come for a visit with promises of gallons of cocktails so he won’t even notice the horse flies gnawing on his knee caps, he has until now declined the offer. So when my friends from far away walked into the restaurant just to have dinner with me I heard myself saying: “Buddy, you love me! You really love me and your plane ticket is proof that you love me!” Though I was laughing when I said it I realized that I wasn’t really joking.
The thing is, I think life is hard sometimes and though we try to maintain faith, it is often fleeting, and sometimes, like when you see your mom in a fetal position in a hospital bed hooked up to beeping machines, sometimes your faith that the world is right and everything is going to be okay is gone and you start to think maybe it’s not going to come back. The world feels off kilter then and it looks scary. So yes, it is nice to have proof, sometimes we just need a little proof of the things we believe in our hearts but can’t see. Though I can’t magically provide that for my kiddos right now I have to believe that over time the questions that they feel about me will fade away. Words mean nothing when you put them up against a reality that won’t stop glaring you in the face. Though I say: “Mommy is going to be fine”, I think those are hard words to accept when what you have seen is something quite the opposite, so I hope, in time my presence will be there proof and the faith that has been shaken will come back to them.
This weekend I needed a boost, I needed someone to tell me that I can do this, I can finish this, and I just needed proof that I would feel good again. On Saturday afternoon from a fetal position I didn’t know where that proof would come from. On Saturday evening, as I sat at a table with my family of friends I felt it, proof that I would feel good, proof that all of you are out there cheering me along and proof that I am loved and it was exactly what I needed to restore my faith that this is all going to be behind me one day and I will feel good again and be there to witness the adventures to come. Timing is everything and this weekend, when I need a restoration of faith I received it and yes, I am going to frame Buddy’s plane ticket.
Now, for the rest of you who have supported me through this but perhaps harbor secret fears about my mortality, I have four words to offer that might shed a little light on the question of ”Julie’s Will to Live”: Betsey Johnson’s Spring Collection. There is simply no way I am going to die while Betsey is still producing dresses that look like that. Seriously. Her Spring 2008 Collection is so enchanting (a cross between 1940’s vintage and 1980’s prom). She calls the collection ‘Prom Queen’ and honestly, when I saw the white dress with the red sash I wept tears of joy. Let me just state for the record that if any of you needed proof that I am going to be fine and live many more days you should just Google Betsey and from the glory of her spring line feel rest assured that this Chicky isn’t going anywhere with dresses like that on a runway.

Love to all of you….j
Julie sporting Betsey Johnson at Shannon’s 40th in Seattle 2007

Chapter Twenty Seven – October 17 2007

Leave it to my daughter to always find the positive in an otherwise dreary situation. I called from Arizona this week to check on my kiddo’s only to hear my son fighting back tears which just KILLS me. I cannot STAND to hear my children cry, but especially not when I am hundreds of miles away and completely unable to comfort him. He explained that his snake died and he was sad. “Don’t cry baby, Mommy will buy you a new pet. Do you want a turtle? Or a dog? A goat? How about a horse? Mommy will buy you a horse.”
What I felt like saying but did not was: Anything baby, Mommy will do anything…. Anything to make you stop feeling sad and to help you escape your otherwise crappy reality and please, please, do not become a crack addict someday, all because you mother had cancer and your snake died at a very critical point in your growing up years.
“That’s okay mom. I’ll get over it, but I hope you feel guilty for wishing he was dead everyday.”
Woops.
“Well, yes, dear heart, now that you mention it. I do feel a little wretched, thank you for pointing that out.”
Just when I started feeling truly depressed about it (and guilty), Campbell Rose picked up the phone and chirped in her most excited voice (and all in one breath).: “Mom! Guess what? Shawn’s snake died today even though Daddy and Shawn bought it a new tank and gave it a bath and tried to make it feel better and now it’s dead and Shawn is crying so I am going to draw him a picture so he’ll stop feeling sad. But GUESS WHAT? Since the snake is dead there is no one to eat the mice that we bought today, and Daddy said I get to keep them in the basement as my pets until you come home.”
Before I could respond she went on to say:
“Daddy said not to tell you that because he said if you found out there were mice living in your house you would FREAK out. But he said you’re not coming home for five whole days so I get to keep them as pets until your plane lands and then we have to put them in a box and take them back to Wayne and pretend we never kept them at all. I named them Tinkle and Winkle and they have little hands that look just like their feet and guess what they’re doing right now? Guess! You’ll just never guess.! Right now Tinkle is trying to play leap frog with Winkle. Or something like leap frog. Shawn!! Shawn! Why is Tinkle doing that to Winkle?”
This week my best friend and chemo partner, Cheri Marie, took me with her to Arizona for a break from life and to help get me through these last couple of weeks of chemo. I had one treatment at Swedish before traveling to Arizona and then back to Seattle for my last one today. I don’t think enough has been written about the healing powers of the sun. Actually, I should be more specific. I don’t think enough has been written about the healing powers of the sun, a pool, cocktails, chick magazines, and no men. I felt all the same side effects as I did at home after chemo: sick, tired, confused, pain, insomnia but somehow, when lying on a floaty in the middle of a pool surrounded by Palm trees with a Corona in my hand and sun on my face the nastiness of the situation seemed somehow to have been parked at the gate . Though I could see it’s ugly face from where I was, it couldn’t quite reach me in the same way and so I found myself feeling slightly more confidant when approaching my final treatment.

I saw my oncologist while in Seattle to discuss the protocol for my life now that I am at the end of the chemo road. Though I am back on the reconstruction track and will have another surgery in December to remove the tissue expanders and put the new (smaller) implants in place. Isn’t that what everyone wants for Christmas? New silicone breasts?
Honestly, the feeling of being done is a bit anticlimactic as they still consider me to be in “No Mans Land”. I was surprised to hear how frequent my check ups at Swedish will be for the next five years. Every three months I will need to return for screening as they watch for changes specifically of my liver and lungs. I guess if it returns that’s where it will rear its ugly head first. I wasn’t sure what to expect when I came down for my final check up. I guess I was secretly hoping she would tell me that I was off the hook and she would never need to see me again. The frequency of my monitoring is standard because of the kind of cancer I had and it’s aggressive nature should it recur. It’s weird because I think I am relieved that somewhere out there someone is paying attention so if it does come back it should be caught early. But I guess I am a little let down that I can’t quite put this completely behind me yet, that for the next five years anyway that I will be reminded of this year, this disease, the possibility that it could come back and that I could begin the walk again. I’m not complaining though…..as was pointed out to me this week by a rather aggressive and slightly socially inappropriate salesperson, being alive is in fact better than being dead.
So there I was, standing at the check out counter, attempting to hurry before my nephew, Hayden, started letting it be known that he didn’t appreciate the shopping experience for one more moment in his stroller, when I was assaulted with the following conversation:
“So are you in town for business or pleasure?”
“Pleasure. What is my total please?”
“That’s nice. What kind of pleasure?”
“The regular kind. Can I have my receipt please?”
“So are you planning to wear these dresses for anything specific, some romantic evening planned with some one special in your life? Or another romantic occasion perhaps?”
“Uhhhh…..Nope.”
“So what did you say you were doing down here? A vacation?”
“I didn’t say.”
(Long pause as he continues to stare at me while holding my dresses and credit card hostage.)
“I am down here with my best friend celebrating the end of my chemotherapy. Could I have my bag please?”
“Oh! Well, what kind of treatment did you have to have?”
“Che-Mo-The-Ra-Py”
“Wow……. Well……I’m really sorry…… I don’t really know what to say. Hmmmm… Well look at you! I guess it’s good that you made it…. that you ummm…. You know… That you didn’t… you know…..I mean, it’s good that you’re you know…. alive and everything, I mean that you not…… ummmm, you know…. I guess………..”
At this point I looked heavenward and offered the following snipe to our good Lord and Savior. Seriously God? Seriously… this is what you’re giving me today for shits and giggles, or perhaps this is my punishment for being so shallow that I choose to ward off the creeping misery by purchasing yet another, unnecessary, yet “oh so darling” dress.
“Well, perfect stranger and salesperson that I do not know, you’re absolutely correct and I concur…it is good that I made it…. that I ummm..did not….you know, not make it… making it is of course better in my book than the alternative which is not making it. And you are correct, alive does have a slightly more cheerful ring to it than the alternative which is ummmm… dead. Thank you for pointing out to me what could have otherwise gone completely unnoticed. My bag………please.”
I wasn’t really irritated with him, just impatient and tired of explaining to perfect strangers who notice the scars, comment on the ridiculous firmness of my breasts, the bags under my eyes, the gray color of my face on the day of chemo. But the little guy had a point. Alive is better than the alternative, so despite the necessary continuation of medical appointments over the next five years, I am not complaining.
I read an article this week about a famous French artist, musician, singer who passed away many years ago. His daughter is now attempting to turn his home into a museum so they featured him in the article with excerpts from interviews from past loves of his life, some of whom by the way are not too shabby, Bridget Bardot and Jane Birken being two of them. Anyhoo – they interviewed all of these women in his life who go on and on about the reasons why they loved him and the reasons why he was attractive to them despite his obvious physical shortcomings. I was struck by one of their comments: “He had the eyes of a child.” I loved the thought of that….how he was celebrated for the way he honored the little boy still inside of him.
It made me think of my mother and how that is one of her most endearing qualities as well. She sees things that others simply don’t see. Spending time with her means that invariably you will laugh, out loud… because she will find something to say or to show you that you did not notice before and the laughter is both because of her laughter and because you marvel at the fact that you would never have noticed one of life’s most charming details had she not pointed it out to you. I love that about her and I am grateful that she has taught my children to look at the world in the same way. When faced with a beautiful flower both of my children will stop to smell it and though they wouldn’t be able to tell you what drew them to it, those that know my mother would be able to tell you that they did it because of her. She taught them to stop and smell the flowers, to find the little things in life that make you smile and instead of walking by them, to pick them up, hold them to the light and let them move you. When I look at her, despite the years and life’s difficult lessons, I can still see the little girl in her… my mother has the eyes of a child.
I suppose I was struck by that quote in part because I keep turning the question so many of you have asked of me in my head this week. “How has cancer changed you?” I thought about it a lot as I walked, floated, or sun bathed my way through the days. Randomly here are the thoughts that came to me:
Cocktails in the morning are not a bad way to go through life.
Alive is better than dead.
Control is an illusion.
Someday when I feel hungry again I’m going to start eating cake and I’m not going to stop until they have to lift my ass out of the house with a crane.
Suffering breeds compassion because once you have suffered you can never take off the lenses and walking by another suffering soul without stopping becomes inexcusable.
I believe in my heart now that death is not a scary place, but perhaps the prospect of the unknown is intimidating and that during those moments when medication can’t help you the memories of the people you hold dearest will keep you safe and warm in ways that no pill or doctor can reach you.
Experiences will be the blankets that we wrap ourselves in when we are scared of what is to come.
I don’t want to die yet because I have more work to do on the relationships that I have been graced with. I want to be able to say that I did my best and that I honored the people in my life in the best way I could and I can’t say that yet. Maybe I never will but I want the time to try harder.
Should I buy the sequined dress at Betsey that I can’t afford but makes me happy? Thank God for Betsey.
It is possible to love people so passionately that only God could ever know how much.
Many of you have commented on how you felt as though you couldn’t be here to help me through this disease. But the thing is I know you couldn’t all be by my side during chemo or helping me up the stairs to bed at night. For practical purposes you couldn’t be there….I know if given the opportunity to do so that many of you would have. The thing is though, all of you have helped me in the way that you could and it was the cumulative effort of all of those prayers, the cards, the flowers, the visits, the gifts, the time, the hope. I made it because of the people in my life that carried me in your hearts and in your thoughts everyday as I suffered. I could feel your silent hope for me and I clung to it… I wrapped myself in moments of you when the pain brought me somewhere close to insanity… it was you… it was all of you.
Practically speaking, I do not believe it’s possible to live everyday as if we are dying, to appreciate every experience and glorify every happening. Whether we like it or not our days can be filled with drudgery and ordinariness and the chore that comes with making our little worlds work. But I am hopeful that I can face the world now with the intention of honoring the child inside me more. I think about my kids, the way they hug you without wondering if the love they feel for you will somehow come back to hurt them, the way they are fascinated by new experiences and are never too proud or too embarrassed to express their excitement. The way they believe without realizing it that every morning is a fresh start. The way they approach new experiences without reservation, they cry when they are hurt and they laugh when they are happy and they notice the little things around them that should make us laugh and cry and wonder. Yes, at the end of my life if someone said: “She had the eyes of a child.” I think from wherever I am I would turn my face to the rain and smile.
Love to all you,
j

Chapters 16 - 20

June 29, 2007 – Chapter Sixteen

Julie’s Stinking Cancer Update: Tuesday will be my 12th chemo treatment. I think that makes me officially halfway there though I can’t remember now if the original order was for 24 or 25 weeks. Anyhoo – it’s a milestone for me and I think I’ll celebrate. Possibly by wearing my new Martini shaped eyewear that Miss Jenny sent my way. I think people send me things as jokes and think that no person in their right mind would be caught dead in the item and yet there I am, wearing them and feeling oh so very cha cha. Honest to God. I have them on my head right now.

Chemo Partner Cheri Marie and Julie sporting the new Martini eyewear.

Anyhoo – back to the Big “C”… so I’m halfway Home and for the most part I’m doing fine. The irritation with my eyes and my fatigue are my biggest complaints. My hair is falling out in chunks now and that is kind of scary. I can’t wash it down the drain anymore because even I realize it’s time to admit that the daily “handful” is more than the recommended amount for a non-industrial drain. I do occasionally try to bolster myself up though and tell myself things like, “Well maybe it’s not as bad as it looks”. This morning was one of those times so I tried the whole, “not so bad… maybe it just looks worse than it is… etc.” I pulled open the shower curtain and as Trevor passed by and saw one of my piles of hair his expression was one of horror… “OH MY GOD! Jesus, it’s really starting to come out now!” So here’s a note to those of you living with someone on chemotherapy. Keep your head down, avoid eye contact and confirm nothing. I think this is one of those moments like when someone you like is wearing a new outfit. Even if your actually thinking “Dear God, poor choices have been made here.” Or “For the love of everything Holy! Take that off and do not make me look at it again.” You may think those things but you DO NOT actually say them out loud. For your own safety. Sometimes less is more. When someone you love is losing their hair at an alarming rate, you may just want to pretend you don’t notice.
I keep writing about my brain damage on chemo and I know it’s getting tedious but I think I spend more time analyzing it because I work with a group of really wonderful people who experience the same thing. To be honest I have always considered myself to be good at working with old people. I don’t talk to them like they’re two even if their behaviors can be reminiscent of it. I get that they are old souls who have led amazing lives and who deserve respect and kindness even if their behavior doesn’t reflect that at the moment. I get it. Some people never can. But I do and I always have. I am not a saint. I could never be a teacher because I do not have the patience children deserve, I just thought I got old people. I realize now though that my confidence with “getting” my residents was perhaps overly stated before.
Now I think that we are all really very arrogant in our youth without meaning to be. If you come to work in this building you are young. Your mind, your body, your skin, the fact that you have a life and places to be and people to see demonstrates that. Though I respected them and loved them I was arrogant in the fact that I knew I would out live them, that my body would out last theirs, and that my abilities would not diminish as theirs were. So it has been such a gift to wonder now if that is really the case. I can tell you that I treat them differently now. I relate to them. I CAN RELATE TO THESE OLD SOULS. I thought of that again this morning when I wondered if it was snowing. Yes, I wondered for a moment if it was snowing. Here is how Julie with Dementia works: I looked at the trees across the bay and from where I was sitting with the light shining on them, they looked almost white. So I thought. “It’s snowing.” Then something seemed off about that observation but I didn’t realize immediately what it was. So I thought: “I wonder if that’s right, I better double check.” So then I thought: “When does it snow in Ketchikan? October? Let’s see, it’s July so August, September, October. No, it can’t be snowing.” What is a straight shot in terms of Yes or No answers in your brain is more of a meandering path for me right now. Yes, I eventually get to the right answer but it is exhausting and deeply disturbing to feel my brain in all of it sluggishness.
Please don’t mistake this as a depressing passage, it’s not. The fact that I can relate to my residents is a gift that I would have missed entirely had I not been handed this little package. I’m only halfway there but trust me, it was worth it.
Endurance…. I have never been an “endurance” kind of gal…. I think the simplest way to demonstrate that point, though there are MANY examples, is to say that I was a cheerleader. I took one look at the basketball players running suicide drills and decided that cheerleading was perhaps more my cup of tea. If these Chapters were just being sent to the original list I wouldn’t be too worried about insulting some passionate little cheerleading enthusiast but since they are being forwarded on to God knows where, I should clarify here that there are two kinds of cheerleaders. There are the cheerleaders born and bred to the sport who are acrobats and gymnasts and who make football players look like wimps. The kind that try out in front of the whole school and whose mothers have been arrested for attempted murder when their princesses do not make the squad. (Did you guys see that episode of Dateline?) There are those cheerleaders and then there is the kind of cheerleading I participated in. I wore a short skirt and I yelled at the crowd.
The point being that I have lived my life avoiding activities which would require anything close to endurance. But I was thinking about endurance Wednesday in chemo. I was watching the maple trees outside the window. Over the course of the treatments I have watched their leaves grow and bloom and change color. I love to watch them in the breeze. I try not to think about the fact that I will be sitting in that same chair watching the leaves fall. I try not to think about it but I do. Then I think about endurance and how everyday, but especially Wednesdays, are a test of my endurance. I measure everything in terms of the task directly in front of me. I tell myself to just get started and if it’s too hard then I can stop. But I know deep down that I hate to quit something once I start so I finish that task then I tell myself the same thing about the next one and the next one and the next one until I find myself at the end of a day and I crawl under the covers and close my eyes. Endurance was never a word I would have said I understood before but I know it now, intimately.
I was gardening this week…I’m not supposed to be. Something about the chemicals etc. At first I was relieved and thought I could take the year off and no one would think I was a loser because I have a valid excuse. But honestly, I just can’t do it. I tried, but the weeds were killing me and I HAD to get the veggies in the ground. There is something very therapeutic about dirt and a shovel and green things, that and my little dolly chirping in the background. She loves to play in the clover and pretend an old, broken umbrella is really a horse. She feeds the horse for hours amid the bumble bees and flowers. Occasionally I hear her say things like: “Don’t eat so fast Mr. Horsey, you are going to choke on all that grass and get a tummy ache.” Or “Don’t you shake your little butt at me Mr. Bumblebee! And if you try to sting me I’m just going to run away.” So by now you all may have visions of me and my gardening therapy, planting and growing things and enjoying the beauty around me. But I have to be honest and tell you that the most therapeutic thing I did while gardening was to kill a bush. I killed a Rhododendron and it felt VERY, VERY good. Possibly another “special needs” moment but I was damn sick of watching that Rhodie struggle to live. First of all, I have never really liked them, I think they are kind of common. Instead I buy rose bushes every year and envision myself with gardens filled with roses. Every year they bloom and then they die in the winter and I have to pay hundreds of dollars to replace them. So call me a slow learner but I am becoming acquainted with the idea that Rhododendrons are a staple in SE gardens for a reason. Anyway – I have one Rhodie that has been dying since I purchased it five years ago. It always has a few green leaves and one or two blooms but is generally a pathetic bush. I have moved it, I have weeded it, I have fertilized it, and I have had words with it. But it continues to eek a pathetic life in my garden. And this year, there is something about looking at it every day that just pisses me off. I feel like I gave it every opportunity to flourish and it hasn’t. So I killed it. I pulled it from it’s roots which left me laying in the dirt for five minutes recovering but I did it. And I have to say that it is a relief to look at my garden now… everything green and growing, blooming and living…. Nothing dying…. As it should be. Right?
This may sound very mundane to some of you, but you know what really makes me grateful this week? My overstuffed, fabulous chair. It’s in the corner of my bedroom looking out over the channel. From that chair I watch whales in the bay, fishing boats coming home, and giant cruise ships stuck in rain squalls. I love my chair. I love that when I think back on this time in my life and all of the struggles that I will remember that chair, I will remember feeling safe and warm and loved. I will remember being held in that chair. I will remember saying “I love you” in that chair and I will remember the healing power of those moments.

Love to all of you…….j

The view from Julie’s Chair

July 8, 2007 - Chapter Seventeen

My friend Vickie sent me a card that said: “You are the story behind so many of my best stories.” I love that line and it has left me thinking about it all week - Who are the people behind my best stories and do I keep them in my life and if not then why not? Time and distance are obvious culprits… but there are other reasons too… and I’ve been thinking about it and how I could do better… I could reconnect or at the very least tell them that they are the story behind so many of my best stories…..
So I’ve been thinking about the people in my life, and their personalities and what they give me and what they take from me. I suppose I’ve been thinking about it because the fourth of July in Ketchikan is always a time of homecoming and catching up. I’ve been able to spend some time with people that I have really missed and it has been nice to focus my energy on something other than being sick. It has been such a busy time that I feel like I’m spinning in circles from one gathering to the next and barely able to process one interaction before there is another. But when I’ve had the time to retreat to my chair and look out the window I’ve been replaying the conversations and wonder about the people behind them. It reminds me of looking for pretty rocks on the beach. Picking them up and looking at them in the light. Putting them in your pocket if they mean something or strike you as particularly beautiful in some way but discarding the ones that turn out to be less than you thought it would be, or worse, the ones that turn out to be downright ugly.
I marvel at the pretty ones - the people who leave you wanting more and wishing you could put them in your pocket because when you turn to walk away from them you realize that they make you feel good, that the world is good. I also marvel at the negative people in my life, the ones that offer judgment and harshness, either on an obvious level or hiding behind the surface of a smile. I wonder about them too…….how did they get that way and why in the hell does God put them in our lives. But I think it must be for the same reason we are given the opportunity to interact with the beautiful ones… because the difference between the two can sometimes be subtle and we each have in us the capacity to be both…positive and giving, or venomous and harsh. I think about the times in my life when I’ve been ugly…how easy it is to become secure in my life, my world, my successes, so that others can seem less than what I think they should be… yes, it’s ugly, but I’ve been there. If I had this year to exchange for another one, I wouldn’t do it…. I wouldn’t take the pain away, or the illness, or any of the other difficult lessons life has thrown at me……because it’s a gift to realize how quickly life can change either because of decisions we make or because life throws us something unexpected….and more than anything I realize how foolish it is to become so secure in our own lives that we do not bother to offer something beautiful to others… there is danger in passing judgment… both in the way it takes from those around us and the lessons it offers our children. Simply stated, as I sit in my chair looking out my window today, I think I will try harder to be one of the pretty rocks in the world..
Kenny Eichner was on my mind all week, as I think he was for lots of people. I was dreading the parade, knowing that he wouldn’t be flying the flag overhead this year for the first time since I can remember. Though I was proud to know that Eric would be doing it, I still felt the loss. During the parade I looked around me and saw the hole that he has left among his family and his friends…. And it just moved me. To think that each of us has the capability to leave that sort of legacy… not the Pioneer or the Legend part… because I do not believe that is something each of us could be… those roles are destined for a few…..but the legacy of being such a great father, grandfather, husband, and friend…. to be so wonderful to the people around you that when you are gone there is an emptiness that lingers… and cannot be filled. That is the part about Kenny Eichner that inspires me… In his world the people who knew him would say that he was the story behind so many of their best stories.
I wonder who that is for each of you…who are the people in your lives that inspire you to be better, happier, kinder, the people that bring you joy, make you laugh, or feel as though you’re not alone?…..Who are they? Are they next to you? If not, then why not?
Inspiration for the week is obvious, it’s all of you… all of the ways my conversations with you have moved me, made me think, left me feeling better or worse… it’s a gift, all of it… so thank you for the way you have changed me and keep changing me…

Love to all of you……j

Campbell Rose, twin babies, and Mommy sporting “Remembering a Legend” T-shirts in honor of our hero, Grandpa Eichner.

July 16, 2007 – Chapter Eighteen

Sorry for the delay with this one… and thanks for the calls about it…. I’ve discovered that my audience feels secure when the e mails come regularly. I’ve been struggling this week with what I have left to say. Lots of pages of typed words… lots of different stories… but none of it seems important when I finally go to send the Chapter. So I’ve held onto it…. Occasionally picking it up, reading the pages and starting completely over. I feel a little flat… I wonder why that is… maybe tired of being in limbo…. Tired of wondering… Perhaps just tired….

Humor is inherent in “Julieland”… my life is like a stand up comic routine. Honestly. Somebody should film me so you could all sit back over a bowl of popcorn in the evenings and laugh at the way I manage to look like an idiot. It’s a gift. I am a horse’s ass, most of the time.
I had a manager meeting at my house today. I like to invite the people I work closest with to my home every now and then to thank them for the ways that they put up with me and because it seems ridiculous that we could spend more time with each other than with our families and know so little about one another. Anyway – it’s been a long time since I’ve done it and I wanted to gather before I went on my trip to Washington this week. So I was making lunch for the group and here was my thought about dessert. “I should make something with Strawberries. Everybody likes strawberries.” So I found a recipe and made a nice little strawberry pie. I put it in the fridge to chill. Then I got busy around the kitchen and thought… “I should make something with lemons”… so I made lemon bars then I put that in the pantry. “Chocolate… I should make something with Chocolate… cake it is”…. Then… “Apples… everyone likes Apples”. My short term memory though impaired is not completely gone yet so I at least had the vague notion that I had prepared more than a couple of desserts but didn’t recall exactly how many I had made until I went to put lunch on the counter and realized that my inability to make a simple decision or to keep track of details meant that I prepared many, many, many desserts…for a very, very, very small group. In an effort to hide the fact that I am losing my marbles I told them something that I thought was more believable than the truth and possibly less alarming…. I told them that I was drunk.
Something happened after my manager meeting though that rocked my world, made me giddy, laugh out loud, catch my breath and feel like spinning in circles with my arms wide open….
I got a little package in the mail.
I know it’s shallow and wrong and all of that but last week after chemo I felt like crap. Every week seems to hit me a little harder. I move slower, do less, feel as if I am sick. The thing that bothers me about that is that I’ve been trying to muscle my way through this process. The whole “bury my head in the sand” theme combined with the “fake it till you make it” and “when life kicks you, kick it back” etc. etc. etc. --- all of those little slogans and more used in combination to elbow my way through the bogs of this bullshit disease … and if the process was only three months long I could have done it and most of you would never have really noticed me failing. I mean you see what I share with you every week but you probably wouldn’t have really seen me stumble. Yet here I am… halfway through and it’s getting to me and I am going to have to start looking sick and acting sick because honestly, I can’t keep maintaining the effort that is involved in pretending I’m not. And that REALLY, REALLY pisses me off.
Anyway, last Wednesday evening I was trying to think of something to cling to… some reason to get excited, to feel like myself, to look forward to moments to come instead of dreading the ones that I know will hurt. Life is funny that way, its less about the circumstance before you and more about the way you choose to see them. But occasionally life does spin me on my tail a bit and it takes me awhile to shake my head and recover from the blow. Wednesday I was trying to become oriented when I found a pair of shoes on my friend Betsey’s website that spoke to me. That is dangerous, dangerous territory in Julieland…
Trust me, I’m not proud and when it happens I usually at least make an attempt to call for back up. Here is my sad little plea for help.
“I found a pair of shoes that spoke to me, talk me down from the ledge.” But though my best friend gave it her best effort to talk some sense into me, as usual, her logic fell on completely deaf ears.

But in my defense, here is WHY and if you can read the following description without being moved to a state of bliss then you possibly do not understand me…
Black Mary Janes with a silver heart buckle…. Not JUST Mary Janes, but SPARKLY, Mary Janes.

What is it about a little bit of glitter that just cheers me the hell up. The shoes remind me of Christmas ornaments on my feet. I love Christmas ornaments. I love the thought of them, I love shopping for them, I love picking them, buying them, carrying them home, wrapping them up and storing them, I love it when Christmas rolls around and I unwrap them and hang them from the branches. I own some really ornate, complicated ones… there isn’t one ornament on my tree that doesn’t have a story or a reason for being there but honestly the one that inspires me the most is one that I bought at a garage sale for 50 cents. I use it as the star for the top of the tree. It’s a 1960ish pink, tattered star, an angel sits in the center of the star with a bit of glitter still clinging to her pink tulle skirt… she has such a sweet face and she is somewhere between gaudy/tacky, retro/classic, and whimsical/charming…. One might make the case that those are also appropriate descriptions for her owner as well. Anyhoo – her wiring is REALLY bad (hmmm.. another interesting comparison) and I’m actually afraid to put that in print because every year that I use her I wonder if this is the year she’s going to start the tree on fire and burn the whole house down but she’s so stinking cute somehow I think maybe she’s worth it. Every year… people give me grief about how I need a new tree topper… perhaps something new and shiny… something trendy… or coordinated… something expensive … but every year the same thought comes to me… how she has a past… I don’t know what it is but she does…. Before she came into my world she was a part of some else’s world, graced some one else’s tree, year after year…. My pretty, little complicated angel, broken and damaged but charming and irreplaceable…. No, I think I’ll keep her…. In all of her scary… fun… glittery ways… she speaks to me.
So I sit here typing tonight in my jammies, glass of red wine in hand wearing my sparkly Mary Janes, I know that the rest of you might think its silly to waste time documenting my ridiculous treasures found along the way. But honestly, sometimes the bigger blessings in life that should inspire me…. don’t, and when that happens, thank God … it’s the little treasures… the ones that no one else would see in quite the same way… Sparkly shoes, broken angels, a little glitter… somehow they are enough to make me smile, want more, laugh a little, and restore perspective so that despite the unpleasantness that is assured me… I find myself looking forward to the moments in between..... Love to all of you….j

July 31 2007 – Chapter Nineteen

Well gang! I just finished week sixteen … ten more weeks of chemo to go. In terms of cancer/chemo updates, all is well. I saw my oncologist at Swedish last week and she is thrilled with the care I am receiving from my fantastic doctor and my counts continue to remain stable. Thank God…… some are a bit low which is why I imagine I am so stinking tired…… a tired I’ve never felt before. I am having difficulty trying to figure out how to give some things up, like work or errands and still feel like I accomplished something in a day. Staying home in my jammies sounds so appropriate some days but I can’t manage to force myself to do it yet…….. Things to do…… People to see…..I am looking forward to next week when I am officially in the single digit countdown……….nine sounds a whole lot better than twenty six. Thanks very much to all of our Washington friends who came to see us, entertained us, and honored us with their time…. I enjoyed the trip immensely and the memories even more………
I think Campbell has it more together than I do sometimes with her emotional well being and the “taking what she needs from the world” philosophy to which she so clearly subscribes. Campbell rates her pain in degrees and her treatment therefore is proportionate to her perceived agony.
“Mommy, I fell down in the yard. I have a hurt on my elbow. I have a scrape on my knee…. But my HAND! MY HAND has a HURT, a SCRAPE, and a BLEED. I need a hug, two kisses, an extra squeeze, and a pretty band-aid please, one with princesses if you have it.”
Mommy delivers, and Campbell moves on, the pain behind her and her world fresh, new and ready for more. As adults I wonder how we could get better at that.
“I have a broken heart, a crushed spirit, and my soul feels tired… I need a hug, three kisses, an extra squeeze, a pretty band aid…. and a little gin and tonic, Hendricks, if you have it.”
I might try that this week.
I’ve been thinking about that… as others we know are suffering from loss…It’s hard to know that people you care about are in pain. Like me I imagine they walk through a crowd of people saying the word “fine” over and over…. More for the audience than because it resembles truth…….I find that it is much easier to be the bearer of the burden than the bystander……it hurts to know that others hurt….. Someone once told me that they wished that pain had a color. I agree. If pain had a color and we could all see one another’s suffering as we walked by each other then it would be difficult to ignore, “fine” would become implausible and I would like to believe then that we would all stop what we’re doing and simply hold each other more.
We have this wonderful man in our lives, Chuckybaby…….. he’s an artist and photographer and we are blessed to have the lives of our children documented by him. Occasionally, he sends us photos of his travels which grace our walls. I am always interested in the way people react to his art. I like to stand back and watch them look at the photos all lined out on the wall. It’s fascinating to watch how they react and finally decide which one is their favorite. It always makes me wonder why. Why does that one speak to them? Was it the colors, the people, the buildings? Was it something that reminded them of their youth or something they hope to see in their future? It just makes me wonder.
I saw a sculpture once at the Seattle Sculpture Park. I didn’t particularly enjoy it. In fact, I didn’t like it at all and I looked at it from every angle before I decided that I wouldn’t plunk that thing down in my front yard if someone paid me. But the quote next to it from the artist was interesting and it was something I never really thought about before. I always thought that art was about the piece that was created. But this artist said that he believed that art is less about the piece before you and more about the way people react to it.
I suppose that could be applied to more than the art in our lives, or maybe the interactions in our lives could all be perceived as artistic. I write these silly, sometimes tedious chapters and assume that you are all reading them as I do and taking from them what I intended. But I suppose that isn’t true at all……when I was in Washington this week visiting friends and family I found it interesting how many people commented on receiving the chapters and in particular one chapter that apparently many people have deemed as a favorite (tulip and daffodil). It was perplexing to me and I found myself considering it often over the course of the week because honestly, reading back over these, it was one of my least favorites and one that I wished I hadn’t sent…..so it made me wonder what it was about those stories or words that reached people when I was sure that I hadn’t.
I guess if we think in terms of life as art then it is never about the final product. What we accomplished or succeeded or produced, but about all the immeasurable ways we moved people along the way. The way people reacted to us and from us and because of us…joy and laughter and warmth and passion….moved to feel something because of us….maybe then we’re all artists with the ability to create something spectacular every day.

Love to all of you….j

“I have a hurt, a scrape, AND a bleed.”

Chapter Twenty – August 7, 2007

I see my hand reflected through the monitor screen. It is covered in blue tubes and band-aids. The toxic green syringe is being brought to me now. It goes into the tube and I watch it wind its way down into my vein. Now I wait…it takes just seconds, two blinks and a deep breath and there it is, the feeling in the back of my throat and the pit of my stomach. My body telling my brain that something is not right here and what ever it is that just came on board should be asked to leave…..quickly. Lots of rapid swallowing to keep it down. Here comes the next toxic syringe… I can taste this one…. Makes me think of metal and blood.
“Critically Low”. Those were the words I knew would come but had avoided until now… I was hoping to skim the edges and make it to the end without anything else added to my list of dread. But it’s here so we’re starting the dance now…. The complicated maneuvering of more chemicals and drugs added to my body in order to sustain my counts so I can proceed through the rest of my treatments. It means nothing to me other than more appointments, more injections, more lab work, more discomfort… the real dilemma sits with Stacy, Monica, and Dr. Rinn who have the complicated task of figuring me out, some of this and a little of that to patch me back together and make this process work. That added to my increasing fatigue, nausea, and hair loss and I have to say… it’s been a hell of week…I find myself hoping for different things now. No longer enough patience to make it to the end of this process, but instead that the process will remain the same… no more….no more.
But today I’m choosing to ignore that because lots of amazing things have happened to me this week too. In fact some of them are practically miraculous….
As most of you know, when asked about athletics, Campbell’s response is: “Ummm… No thank you… I just want to be a cheerleader.” But this week she not only agreed to attend soccer camp but she did it. Let me clarify that she only attended because she wanted to: “wear the soccer outfit.” But still, my daughter attended soccer camp and participated. Kind of. It was really more like Campbell building sand castles, Campbell wandering to the net and seeing if her head will fit through, Campbell picking weeds, Campbell covering her head with her shirt and twirling in circles. But the miracle to me and what I am choosing to view as a HUGE step towards my daughter being saved from the clutches of cheerleader hell is that occasionally she would wake from her world of “Campbellness” and realize that she was surrounded by other children playing a sport and she would run toward the ball and kick it…. She would then immediately turn around and walk back to her sand castle without even watching to see where the ball landed but still… I choose to find hope in the fact that my daughter opted to take off the cheerleader outfit and try on the athlete outfit… even if it was short lived and not exactly reeking of athletic talent it was still my little girl being brave enough to try something new and even better than a child running up and down the field kicking the ball was my child who as always, did it her way. Campbell Rose made mommy laugh out loud.
Miracle #2 this week was a note from my favorite designer, Betsey Johnson. You all know that I love her based on previous chapters. I love Betsey because she designs her clothes as if she doesn’t care what other people think of her and she uses words like “whimsy” freely. I sent her one of the chapters that referenced the Battenburg lace dress and she sent me a note back with a box of Betsey treasures. Seriously….. how thrilling is that?….Do you ever think about what it is you can do to make someone’s world better? Do you? I don’t, or at least not enough. But Betsey made me think about it this week because I imagine the note didn’t take very long to write but it made me feel like my day had been bright when in fact it hadn’t been. Interesting isn’t it? Something little to us can be something so huge to someone else. I’m having my note framed and plan to hang it in my closet, my reminder of Betsey, whimsy, and how simple words can make some one else’s world seem bright even when it isn’t.
The thing that I found myself clinging to all week though was the appearance of Fall. I know, it’s not Fall and in fact quite the contrary in Ketchikan at the moment but I had a preview to Fall and I found myself Thanking God for my little sneak peek of my favorite time of year. I realized how much I associate soccer with Fall when I got the kids ready for camp. I think this year part of the thrill is that my body knows the punishment ends in the Fall but part of it is just me looking forward to my favorite moments. The October storms, the sound of the rain pounding on the cabin roof, rain coats and boots, the wind when it makes you feel small, picking out pumpkins and knowing they came from a patch somewhere, and pencils, packs of new pencils and glue sticks. Not to mention darker days and the granddaddy of all thrills… you know what I’m going to say ladies…. Fall Fashions. Doesn’t that just have a nice ring to it…. Fall Fashions. Fall Fashions. Fall Fashions.
Something about the change of seasons gives me hope…. That despite the challenge before us, time marches on and with it comes better times and worse too, but still the prospect of a different season leads me to be hopeful that I’m leaving this one behind and moving on… away from the tubes and chemicals, drugs, and labs, doctors and discomfort…. I’m not there yet, but I’m grateful for the preview that those days will come… and with it the hope that the future holds more laughter than tears…..

Love to all of you…j

Campbell Rose with her beloved, Grady.