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
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.
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
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
