Memorial Day 2008 - The Kashakes Gang


Chapter Thirty Five – May 20 2008

I want nipples.

So how is that for a headline grabber. Yep….at the risk of possibly offending some of my first time readers, or my regulars for that matter I think it deserves to be said. I WANT NIPPLES. And I want them bad. And, if you are one of the lucky people on this planet that has one or even better, two, then you should know…I am jealous. That reminds me of that episode of ‘Friends’ when everyone discovered Chandler had a third nipple…yes, I covet the nipple(s).
Okay, I’m smiling now because I realize that for some of you, this paragraph has become particularly painful. And I have officially veered off of the “fun” path and have become “scary”. So I’ll stop with the “N” word and try to phrase this in a way that is less offensive but still to my point.
Here goes: By now you have all been with me through my surgery (the removing of both of my breasts and all of the skin near the tumor) and then through my reconstruction and chemotherapy. Though I admit now that I was a coward through much of it and too afraid to admit to you or to myself how bad it really was…especially through the tissue expansions. Thankfully most of those days are gone now, blocked out… but still when I let myself remember it…I realize that the scars on my chest are nothing compared to how broken I became inside through the pain. It was a slow torture of sorts and honestly, if given the opportunity to go through reconstruction again, or go through the rest of my life as a scarred, misshapen 8 year old boy, I do believe I would take the latter…hands down. The process was that bad, that agonizing, excruciating, black and without hope…….
The darkest of my days.
Okay, enough…enough about that.
So anyhoo….here I am now, cancer free and reconstructed and ready to move on with my life. Sort of. The reconstruction is not quite finished and for the longest time I couldn’t be bothered. Really…wouldn’t return phone calls to my surgeon, wouldn’t commit to a date, wouldn’t discuss it… No need… Nope…I’m done with the medical thing… Not going back on that table for a LONG, LONG time. But somehow I turned the corner and I find myself anxious for the procedures that finish this. I want it finished. I imagine it’s like being in an accident where your nose has been cut off. At first you’re just so stinking happy to have survived the accident. You wake up in the morning and you’re just so happy to be alive that you don’t really miss your nose at all. But after time, that sense of urgency fades and you start to recall what your face looked like with a nose and suddenly you miss your nose a lot. You stop appreciating the fact that you still have eyes and ears and when you look in the mirror all you can see is your face without a nose.
So there it is….I miss my nose(s) and I am anxious for the procedure in June that will hopefully construct something in their place. I am assuming like my other reconstruction that I have significantly underestimated the amount of pain involved. But it doesn’t matter, I don’t care how much it hurts and I don’t care if they turn out perfect…I’m not looking for precision or flawlessness, I just miss their presence and want something….an alternate, a stand-in, an impersonator, an imposter…I’ll take it/them. Good Lord. Reading back over this I realize that I have become the female/breast cancer version of Pinnochio…I want to be a real boy…or girl that is… and somehow, without it/them I simply don’t feel like I’m real. At the risk of sounding ungrateful…I miss my nose(s) and I want to feel like a real girl again.

So I was at Swedish this week, my appointment went great and my oncologist was very pleased to report that I am doing well. For me, it’s just another sigh of relief that I have three more months of good health under my belt, I imagine it like a game of Simon Says…..”Julie can take one more tiny step away from the gray monster.”
I was sitting in the sun on the second floor of the Cancer Institute, outside on the deck. For some reason I was the only cancer patient that was interested in sunning herself in the 90 degree heat. I openly received hostile stares, I imagine most people don’t consider sunning oneself to be at the top of their list of activities when already fighting cancer, however, being practical was NEVER something I aspired to be and if someone would have handed me a bottle of baby oil I probably would have slapped some on for good measure.
Anyhoo – I was people watching..AGAIN, and I watched as a woman came into view with a baby in a front pack. She was pretty and I admired her long legs and cute shoes and then I watched as she shielded her baby’s face from the sun, and even more touching than that, she proceeded to stroke the top of her daughter’s head with her fingers and I thought it was such a loving thing to do. So in my thought process I wondered if that was the sort of gentle thing that I did when my children were young. I don’t remember, in part because of the current impaired memory that lingers, a left over gift from the chemo monster, but also I think because that time in my life was such a blur of sleepless nights and busy, busy days that I don’t recall clearly what it was like. Whether I did or did not have such gentle moments with my babies. I want them to have had a mother that gently stroked the top of their head and shielded their faces from the harsh light…but I don’t recall….and I thought, is it too late to try to be that person now? But in some ways, I think it is…like when the moment passes and you can have other nice moments, but never that particular moment again. But it bothers me that I can’t remember, if I was that kind of mother to my children. I wish I was…I hope I was…
So I was deep in thought about that when suddenly all of my little alarm feelers went off and I practically lurched out of my chair on the deck to see the pretty lady with the baby disappear into the front doors of the Cancer Center. Oh crap! My next panicked thought was “Don’t come up the stairs, don’t come up the stairs, do not come up those stairs.” I told myself…she could be here for Plastics, or to visit a friend, a physician’s wife an employee maybe. But soon it was her head that I saw coming up the stairs and then she turned and walked to the admitting desk and greeted them by name. “Oh Crap. She knows them by name. Never a good sign.” We get good at being voyeurs’ in each others cases here. All the while attempting to appear as though we are engrossed in our Ladies Home Journals and Good Housekeeping. We are secretly watching each other and trying to figure out which one of us is the sickest. Some times appearances are deceiving. Anyhoo- if you’re wondering who is a patient and who is a visitor, just watch the admission process. If they hand you a blue paper and you head to the lab without asking for directions, you’ve been here before, if the lab techs. greet you by name, you’re a regular, if you come out of your doctors office weeping and they call a counselor to come and be with you then it’s grim….very, very grim. We all watch in silence and avert our gaze while we are horrified and scared and pretending to be otherwise.
I don’t belong here. I don’t mean that like it sounds. I just mean that I don’t look like I belong. People stare at me and some act openly surprised when they see me returning with a lab slip. “Oh, you are a patient.” There are others too, who didn’t lose their hair, but for the most part, the people who look like they belong are the bald ones, or the ones pushing I.V poles, the ones who look sick. I don’t look sick so I feel guilty coming here. It just reminds me of when I was a little girl and I felt like I didn’t belong. When I went to school in the logging camps of Southeast Alaska I felt weird because I was Korean and when I went to school in Washington state I felt weird because I was from Alaska, a logging camp, AND I was Korean, oh and I liked to wear pretty dresses. Go figure. At a time when wearing pretty dresses was not that socially appropriate. Not to mention my mom went through a “side ponytail” thing with me. Seriously. She loved the side pony tail. Good God….Like the kids NEEDED a reason to steal my lunch box and push me on the playground. I should have just worn a sign that said “Freak Show”.
I find that interesting though…you would think that in the Cancer Club we would all be unified in our terror. But we’re not…we’re all still alone…feeling like freak shows, and pretending otherwise.

So anyhoo- I was watching her, up the stairs and past admission and into the lab and all the while I was overcome with sadness for her and for that baby. Oh God….that baby..all I could think was that she has to live so that her baby will grow up to know a mother that would shield her face from the light and stroke her head.
It’s always like this for me though, I come here and try to buoy myself before hand with some ridiculous purchase but as I get closer it all starts to seem real and hard and cold and dark and though I appreciate the Cancer Center itself and all of the wonderful people that care for me, I get caught up in the other people that share that space with me and I am sad for them and for me and it just leaves me drained.
So I retreated to my “Seattle Home” and my Seattle Family allowed me to throw myself into a bottle of gin, all the while pretending not to notice. Thank God for my Seattle Family and for all of the others in my world who remember my appointment when I mention it weeks before and call me in the doctor’s office to say…”I’m thinking of you.” Can I just say again…those four words are a pretty powerful statement…and they can be fuel for a person who desperately needs it so, cheers to: “I’m thinking of you.” And I encourage all of you to use that statement more…not to me…but to each other.
May 31, 2008
My daughter knows the words to Mustang Sally. I don’t know how that happened. Where does ones 6 year old hear: “All she wants to do is ride around Sally….Ride Sally Ride.” As she finishes the last refrain, with feeling by the way, she hops into my lap, grabs my face and presses her cheeks into mine and says: “Lets just remember this one moment together forever, okay.”
“Done Dearheart…Done.”
It’s amazing how with some people, loving them is the most simple, most thrilling, most pure thing there is.
Loving them…my children…so simple. It’s as if it has always been. I just read a quote in a book from Rumi that says: “Lovers don’t finally meet somewhere. They’re in each other all along.” It’s been like that with my kiddos…the hope of them…the dream of them…you look at them for the first time and you fall in…you’re in over your head and it was never a decision that got you there…it was as if the love you feel for them has always been…and it suddenly becomes impossible to remember what life was like before them or since them and it is the way God meant it to be.
Humming Mustang Sally, she skips off to bed…I’ll keep my promise bunny rabbit…I’ll remember this moment for the both of us.

Sande Cougs WSU 2002
By the way, I think I got an answer to my question about whether or not I had gentle moments with my babies. For some reason as I have pondered the question about that this week, thinking about the woman with the baby at Swedish, I keep looking at this picture I had framed that sits above Campbell’s bed. It is of them when Shawn was four and Campbell was one. He has his arm around her on the couch and they ware watching television together. Neither are looking at the camera. But they are in jammies and snuggled up together and with his arm around her he is holding her little hand. Oh My God…I walked in on that moment and I won’t ever be able to describe that feeling…but I will remember it…that one I will remember…
So Campbell was sick this week. We were celebrating my birthday and Trevor’s at my parent’s house and Campbell who loves a good party and is NEVER sick or at least NEVER admits it when she is, curled up in a fetal position with a fever and whimpered. When the adults were all in conversation at the table I watched my son…he walked over to his sister as she slept and he bent down and brushed her bangs off of her forehead and kissed her. “I’m here Campbell. Your brother is here.”
The thing is… maybe part of my neurosis is that I tell myself what I want to hear, but risking that, I’ll say it anyway. I thought about that sweet, gentle act all night and all the next day and the next. I captured it literally. Like a snap shot…it’s one of those moments that I hope to always carry with me. And then this morning I was looking at the photo of them as I went to wake her up for the day and I thought of his sweet moment with her this week and I thought that he is that way for a reason.…it’s not all me…he has had exceptional aunts and uncles, grandmas and grandpas and a father who loves him as much as I do…all of whom have shown him a tremendous amount of affection. But I am comforted by the thought that maybe my son knows how to love his sister because of the way I loved him… and I think that in the moments when I am most scared that I may not be here to see them become all of things I dream for them…in my weakest moments…when I obsess over whether or not I stroked their heads when they were babies and that I missed my opportunity to be the kind of mother I wished for them. I am deeply comforted by the thought that they will become something wonderful, in part because of me…they will be the kind of people who will shield others from the harsh light of the world.. in part…because of me.

Yes…I am inspired by the hope of that.

Love to all of you
j

(My last “Hawaiian” Chapter)
Chapter Thirty Four – April 14, 2008

This morning when I walked into the restroom near the swimming pool I was smiling, still in conversation with someone when I turned to close and lock the door. So it was with a smile on my face that I lurched to the sink and my stomach violently wretched up everything I had to drink that morning. The cleaner they had recently used to wash the tile floor smelled like my chemo tasted. I can’t describe it, can’t explain which chemicals or mixture of chemicals they are but my body knows them and in their presence it responds involuntarily. What pissed me off about it was that I can go a long time now without remembering it…and I can even speak of it without recalling what it felt like…but occasionally something brings it all right back to me and I am shaken and broken all over again.
What I find so disgusting is that I am supposed to be escaping it. This trip, our vacation….these weeks in the sun…the swim suits, the tanning oil, the cocktails, the palm trees…my reward for having endured it…all the things that I pictured over and over again in the hospitals, hooked up to my poison. What I told myself then was that when this over…when it was all over I would leave it behind me. I am so stupid sometimes….it didn’t dawn on me that the little dark monster would lurk quietly inside of me and after all this time and distance it would reappear suddenly in a bathroom in my tropical paradise to kick the shit out of me when no one was looking. Son of a bitch. On my knees now I steadied my shaking hands, pushed myself to a standing position and dusted myself off. I stood at the sink again and washed my face and adjusted my hair. I fumbled for the sunglasses that had fallen and cracked. Looking in the mirror I noticed the familiar greenish tint to my now tan skin, “smile Julie, just smile and no one will notice.”
How twisted and sick does that make me? I was smiling. When I walked back outside again I was smiling. Into the heat and the wind and the noise….the kids wanted money for an ice cream cone, my friends were waiting to finish the conversation and Trevor looked up from his book and studied me from across the pool deck. Did he notice? Did they? I have a nasty habit of attempting to appear unscathed, as if whatever trauma that has just occurred isn’t real if no one else knows. I thought I was getting better at that. This past year has taught me a lot about myself and the many things I don’t want to teach my children to be. It’s better to take the trauma out in the light kiddos and let people look at it with you. As disappointing or embarrassing or hurtful as it may be..let them see your pain and all of the ways in which you are broken so they can help you through it. It makes people feel like you love them if you trust them enough to ask for help. It’s honest, it’s real, it’s human. Perfect? No….but if you feel broken….then be broken…cry…even if, especially if….someone you love is watching.

I have news about my recovery. Something newsworthy in my book anyway, I realize this is going to sound tremendously frivolous to the rest of you, but of worth to me so I’m passing it along just in case those of you who might be in a similar predicament are reading this for validation and the hope of progress.
My eyelashes have experienced a growth spurt. Really. They have. I now have eyelashes that are long enough to fit into a curler. Yay me! They didn’t all fall out with chemo…they just got stubby and thin and remained that way for so long that I was beginning to wonder if they would always be that way. I was trying not to be bitter because as everyone likes to remind me, I am lucky to have not lost all of my hair. But I am happy to report that six months after my last infusion of rat poison, there is progress. Isn’t it strange how progress can sometimes be so slow in movement that we don’t even realize we are inching forward and yet one day you look backwards and realize how much distance has been covered without even noticing there was movement? Yay me! I am no longer the Lashless Wonder. …witless..but not lashless.

So among my discoveries on my fabulous Hawaiian vacation I have also discovered that my world has shifted again. Listen…”Julie’s World” doesn’t shift often. I am a girl happily set in her ways. I am a creature of habit. With habit comes repetition, with repetition comes predictable outcome, with predictable outcome comes the glorious sensation of control….I enjoy those words…I am a creature of habit and repetition, and of control so in my world, if I could help it there would be very little shifting.
But my weeks here have been full of shifting…teeny tiny practically imperceptible rocking and then the massive tectonic plate grinding. My world… it is shifting.

Even on vacation I develop habit. I am comforted by habit…..when I wake up I roll out of bed and put on my running shoes and find the perfect song on my Ipod then I head down the steps until my Nike’s hit the sand and then I run….and I run…and I run…I watch my feet hit the wet sand before me and I try not to concentrate on the fact that it’s hot and the work is hard and I really, really want to quit. The feeling I most look forward to is when I am finished and I unlace my shoes and take off my socks and walk the remainder of the way wading through the waves. I put on my favorite song of the moment, and I spend the remainder of the walk searching the sand for one perfect rock, when I find it I return to the condo to face the most stressful decision of the day.
“Which bikini should I wear today?” I walk out the door and greet the construction crew who is working on the condo and who have become familiar. Like the birds of paradise, hibiscus, plumeria, the lizards, the palm trees, the waves….my construction crew greets me upon my departure from the condo and I can generally gage my success in dressing by their enthusiastic response. Everyone needs a construction crew outside their front door in the morning. Seriously, they could make a troll feel attractive.
Then it’s down the beach in the opposite direction until I happen upon my fresh fruit stand. There I buy the coffee and organic muffins and fresh fruit and vegetables for the day. I fill my bag with all of the things I need to take care of my family and I walk the beach back “home”.
So this morning it dawned on me that I am no longer offended by the aggressive cheerfulness of Hawaiian shirts and day-glo polyester mu-mu’s with the enormous flowers that tourists of every shape, size and gender wear over here. Seriously, this is huge for me. When it dawned on me I actually had to sit down in the sand and think about it. When did that happen? I always assumed my dislike of them was ingrained. Like my intolerance for ugly feet, or Wranglers, sensible shoes, Tupperware parties, El Camino’s or a man with a mullet. There are things in this world that I get and then there are things that I will never get. I was of the assumption that Hawaiian shirts and mu-mu’s were in the latter category. In their defense, I had to admit that since I had never been to Hawaii before this trip that perhaps there was something about them that I was missing. So they weren’t really in my “completely written off” category, they were located in the bin titled “pending judgment but it’s not looking good.”

But through my morning wanderings on the beaches here I have found that I am beginning to get it. Shifting…my opinion is shifting and it’s not just because my psyche is being flooded by visions of them either, though that is also true. Somehow the cheerfulness of all of the bright attire seems slightly less aggressive and I think it’s because I understand now, what inspired them.
What comes to me over and over during my morning treks is that this State is so stinking colorful. I always thought Alaska was the most picturesque place in the world but I have to admit the greens and blues of our fair state are of the more serious, earthy, foresty type….The colors around here are not quite primary, not exactly neon, just bright in a way that seems alive. It’s humming, it’s breathing, it’s vibrating…it’s alive. The scenery in Hawaii is screaming “LOOK AT ME!”, it is loud, vibrant, never subtle….Hawaii is a State that does NOT blend.

I keep thinking about how God is in the details around here. I think of that sometimes when I watch my children. God is not necessarily apparent in children themselves, I mean you don’t always glance at a child and feel Gods presence immediately but in their details there is little doubt that they are of Him. Chubby knuckles, smiling through their eyelashes, high pitched giggles, the feel of their arms around your neck as they pat your back…in their details one is assured of the presence of God. So I’ve been noticing the same thing about the details here. From a distance it’s pretty…but if you look close, it is stunning. Take a flower in Hawaii…it doesn’t even matter which one, though I have my favorites. If you walk by it once you may notice the color or how they smell, but if you walk by again, and walk closer, and then bend down and pick it up and look at one blossom in the light. I promise you will see it in a way that you did not know you could. You stop looking at the flower and instead see the detail and then you realize you can no longer remember why the flower was important because the details of it make it extraordinary. Yes, the flower is pretty, but the details are what make it Gods work and in this assurance of Gods handiwork you find that you are stunned.

So I had a moment this morning… a shifting…I was noticing the blue sky and the ocean and the white waves crashing and the sand and how it sparkled in the light and then I noticed the flowers in the distance and I experienced the strangest sensation that I was running in a painting…a movie. Later in the day a butterfly bumped into me on it’s very disoriented flight down the beach and then of all things, a rainbow… seriously…in the distance a rain shower on a beach miles away produced the most spectacular of rainbows.
In case you weren’t already aware of it…I’m cynical..I’m sarcastic….I used to think it was one of the things I should work on because it’s really unattractive..but now I think it’s just part of me and you either love me despite it or you don’t… so anyhoo, in a fit of sarcasm I just stopped amid all the colorful splendor and looked heavenward: “Seriously God? Don’t you think you’re being a little over the top this morning?” I think that’s when I shifted, when I realized that the Hawaiian shirts with enormous flowers and the loose fitting day glo mu-mu’s are just an attempt to copy the surroundings. Our sad little attempt at paying homage to the beauty and color around us…I don’t find them offensive or garish or ugly. So that we don’t mistake each other here, I doubt that you will see me shopping for a pink polyester mu-mu at the next ABC store, however, you won’t find me mocking them either. I get why they’re popular, I’ve seen all of the bright colors that have inspired them and the flowers that they attempt to represent…I get it…because now that I’ve been here I understand why people love this State and call it their home.

There I go…shifting again. However, in terms of being noteworthy, this next shift could be the one that is most life altering. Not only do I understand why people call this home, I understand why people would leave their current homes to adopt this one. It feels very, very disloyal to type that sentence. And if we’re being perfectly honest with each other, then you should know that I typed it and deleted it many times. But I think my love for Alaska goes without saying. I am an Alaskan girl. More specifically a logging camp girl that is so proud of her heritage and her family and her upbringing. Could I ever truly leave Alaska? No…Never…..But there is a little place here…a town that speaks to me… It’s beautiful and charming…and soulful and artsy and slightly edgy. It has all of this opportunity for purely shallow recreation. I can shop and I can bask and I can drink and I can people watch on a beach and I can nurture and tend to the piece of my soul that is so shallow that calling it a puddle would be overstating its depths. But at the same time, this little town has a tone that invites introspection and art and creativity. So I don’t think you could live here and only tend to one….I think you would have to find ways to tend to the creative side of your spirit too. I’m not saying it would be a 50/50 split….not even 60/40…but there would be SOME creativity…one couldn’t indulge in the sluggishness of a tropical vacation forever, could one?
I can picture a little house, surrounded by exquisite flowers and I can picture wandering the beaches in the morning with my little people scampering about and the coffee shop mid-day where they already know my name. I can picture wandering in the evening at sunset, with my flip flops and my sun dresses and my lap top. Maybe Home is just wherever you happen to be that inspires you. Where people know you and where you feel the presence of God and a connection…where you can make room for the possibilities of something new and dream and grow and love.
Love to all of you!
j

Chapter Thirty Three - April 5 2008

Hello gang! We’re back in Ketchikan now but I’m just getting caught up. Here is one of the chapters I wrote while on vacation this month. Hope you are all well!

Aloha! I am sitting in Paradise. With a computer on my lap, palm trees overhead, soft breeze on the back of my neck…oh and the remnants of sand in my bikini. I can officially report that I am a pig in mud. At the risk of making this sound contrived, a whale is breaching in the distance. I’m not joking, it has flapped its tale at me so many times I stopped counting. I can’t explain why it occasionally stands on his head and puts his tale straight out of the water, though I suppose I can’t really explain why my kids are doing the same thing in the pool right now. I hear laughter as hordes of children argue over who held their breath the longest WHILE standing on their head under water. Playing…Do whales play too? It certainly seems evident that they are happier here in Paradise. I mean they seem down right perky…joyful, effusive, and ecstatic…..happy. I watch these same whales gliding through the channel at home in Ketchikan, and they DO NOT act like this. I’m not a whale expert but I’ve been told that they travel to Alaska for the summer and spend their winters in Hawaii- “snowbirds” of the massive, krill eating kind, but “snowbirds” all the same. They live in Hawaii (playing) part of the year and Alaska (eating) part of the year. I can’t tell if I’m drunk or they are, (both maybe) but they are out in the water (as I type) flipping and flapping around, so they spend their summer in Alaska, working to fill their bellies and they road trip south for the winter and then spend their days lounging in the sun, relaxing in their environment, bonding with family and friends, and recreating…is it wrong that I aspire to live the life of a whale?

We’ve been spending our time snorkeling and diving, taking surf lessons, playing tennis and basking…It wasn’t until my second week though (yes, I realize by phrasing it this way that I am implying that I have been here for more than one week and yes, the assumption of multiple weeks in Paradise is correct though I won’t tell you how many because I’m afraid it will just make you hate me) when I assumed my 10:00 a.m. position of being poolside (with a cooler of cocktails) that it dawned on me that I was “unwound”. I could feel it in my shoulders and as I stretched my oiled toes in the sun.
Hmmm….maybe all it takes is a plane ticket to Paradise because apparently happiness resides here.

No, I suppose happiness isn’t a place is it? Measuring ones exact happiness is a little tricky too. Obviously, happiness can’t be measured in years or pounds or currency, in friends, in dresses, in children….and then my light bulb (hanging slightly off center and dimmer than yours, I’m sure) sprang to life and it suddenly all made sense. My happiness can be measured in fluid ounces. I’m serious too. 3 (or so) ounces of Hendricks, 12 ounces of Coconut Tanning Oil, a 16 ounce non-fat mocha a 20 ounce diet coke and one deep blue pool and one seemingly infinite Ocean and VOILA! Julie has officially sloshed her way to happiness.

So I was disappointed later that day when a song came on the I-pod that made me think of things that were sad and I started to feel something familiar and dark creeping in. Later I looked across the pool and watched a woman struggle to stand as she repositioned the cap that she was using to protect her glaringly bald head. The tracks on her abused veins were practically screaming chemotherapy to me and I shuttered involuntarily. Shawn noticed her too and came rushing to report: “Mom, look over there! She must have cancer too. You should go talk to her!” What I found interesting and wasn’t nearly brave enough to admit to him was that instead of wanting to approach her I wanted to flee…really…I wanted to run down the beach and keep running until I could no longer see her, or the image of her…at the very least I wanted to move my lawn chair to the other side of the pool deck…every time she came within view I found myself hurriedly looking away. I am a coward….
That evening as the wind began to pick up and the sun began to set my daughter noticed the palm trees dancing and she started to dance among them in the lawn, singing a song about one of her “best friends” back home and it brought me right back to -Home- and the failings and success of our relationships there.
After the kids went to sleep, I sat on the lanai and listened to the crashing waves and thought about the creeping misery of heartbreak and disappointment and sadness and worry that plagues us in real life…the same emotions I had resolved to leave at home with the dirty laundry and the plants that needed watering. There they were, sharing a lawn chair with me and my previously happy day in Paradise. Unwanted, uninvited, unexpected stowaways sharing the seat next to me in the darkness…”How did you get here?”

So I have a story for you. Sort of. I’ll call it the story of my “Gingersnaps.” I was watching a family on the beach today that reminded me of gingersnaps…warm, round, dark, and yummy. So I call them my gingersnaps and they will forever reside in my mind and now yours as such. So anyhoo, they changed my life. Yep, there I go again…another life altering moment that would otherwise seem ordinary to those of you who are smarter than me, but since I need a lot of work on this particular subject I thought it was worth keeping in my little mental deck of cards so here it is.

We were at a beach with huge waves… so massive that Campbellini would wait for the wave to recede, run to grab a handful of wet sand, and race back to her castle all the while looking over her shoulder and shrieking to make sure the wave didn’t come up behind her and knock her out. It didn’t help that I told her if she got near the ocean a wave was going to come up and steal her and drag her back to China and there was no way I would ever be able to find her. Whoopsie. Note to self. “Stop freaking the children out.” I was flipping through my favorite magazine and people watching. If it were a sport I would be an Olympian. So entranced was I by the people around me, particularly the newbies (from Iowa) wearing teensy tiny bikinis and who unwittingly ran into the shore without realizing how big the waves were. Then (and here comes the good stuff – sadistic though it may be) I had the true pleasure of watching their suits get pulled off and their bodies thrown to the sand and then picked up and thrown again. This would not be humorous at all (since some of them returned to shore, broken and battered) if they weren’t all the while still trying to maintain the impression that they were in complete control of the situation. It's funny because it reminded me of what an ass I must look like in real life when the crap is really hitting the fan and all the while I am attempting to tell all of you that I am fine, everything is fine, just fine.

So eventually I notice a family on the beach near our “camp site.” In order to bask in the sun, my family requires a great deal of gear. There are towels, and sand toys, coolers and boogey boards, snorkeling gear, chairs, umbrellas, oil for me and Campbell, SPF of every brand and strength for Shawn Patrick. Since my Sherpa (Trevor) went home for a week to work, I have the distinct pleasure of hauling all of the “necessities” to the beach myself which is why I noticed how much crap it takes our family to adventure for one day. So what caught my attention about the Gingersnaps was that they came to the beach without any stuff. No snacks, towels, umbrellas, coolers, and sand toys. They lumbered down the trail from the parking area wearing worn out shorts with no shoes and each carrying a boogey board. But they had no “stuff.”
Did I mention that they were not exactly Waifish in nature. In fact I had to shush my son as he exclaimed: “Mom! Look at that guy! He’s the biggest man I’ve ever seen. Take a picture of his crack!” (It’s hard to vehemently shush your child and heatedly lecture him on appropriate behavior AND make your statement seem sincere when you are all the while fumbling in your beach bag for the camera because you really, really want a picture of that too.) Once I got past that I noticed how many of them there were… all boys, various ages, and sizes but with the same dark, dark skin. Then they hit the water and all eyes were upon them…massive and cumbersome on land….yet in the water they became acrobats, athletes, amphibious…so talented and somehow, completely exempt from the laws of gravity. So by this time I’m not only fascinated, I’m hooked and as I look around I realized so was my son, and my daughter, and everyone else in our vicinity.

After a time, Daddy Gingersnap would get out of the surf, lumber to the shore and plop down in the sand to rest, his dark flesh settling in around him. From the distance he watched his family of little (figuratively speaking) Gingersnaps frolicking in the sea and he would laugh. He would watch the others, calling to one another, coaching the younger Gingersnaps and cheering each other on. I love the thought of that…this big man sitting all alone in the sand laughing out loud at his family in front of him. And the thing is, that laugh…that laugh was unforgettable, spectacular… a marvel. It was the kind of laugh that left no room for any other emotion but pure joy. It wasn’t forced, or contrived, or pleasant or well mannered. It was a rumbling, effusive, contagious force that shook his entire body as it filled the air around him.

I don’t know their story and I don’t even know if the moment was significant to them… but it was to me and I think it was to the others around me….who sat and watched as I did, we were voyeurs in their world. My magnificent Gingersnap family…they required no “stuff”, no friends, no planned activity. Their day seemed simple and spontaneous, and full…of each other. How did Daddy Gingersnap get that so right? That ability to stay anchored in that moment together? To just be….
Happy…
To just be………..

Love to all of you.
j

Chapter Thirty Two

Shawn Patrick sledding with friends

February 2008

Chapter Thirty Two – February 12, 2008

So I was scared. I admit it. Now, not before, I wouldn’t have admitted it before but I’ll say it now. I was scared.

The timeline goes like this….December 06 discovered a weird lump, December 06 biopsy confirmed cancer, January 07 Swedish and doctors, doctors, and more doctors, March 07 double mastectomy and reconstruction (tissue expanders), April 07-October 07 Expansions and Chemo grays, haze and daze, December 07 Reconstructive Surgery (Implants)…….
So throughout that time, I marched along like a little soldier, one foot in front of the other, don’t look down, just keep swimming, just keep swimming, just keep swimming…anyhoo…I was proud of that… I only asked two questions: “What is the most aggressive treatment I can have so that I never need to look at my kids and tell them that mommy has cancer again?” and “Will I lose my hair?”…. Don’t look down…. Just keep going.

So it was interesting this month when I hit a wall and stopped. I hit the wall and fell and I laid there and it took weeks to pick myself up….It was supposed to be simple really. At my last oncology appointment in October I reported to all of you that I was finished, finished with treatment, cancer, and even my weekly updates to all of you. Yep, clap my hands, dust myself off and put it behind me, moving right along. All I had left to do was a check up at Swedish in three months and then every three months after. No big deal right?

So when the 60th day rolled around I had it on my calendar to call Swedish and my “oh so cha cha” oncologist (is it wrong that I chose her in part because she is smart, good at her job AND because she was wearing earrings that I thought were darling?) So that day rolled by and the next and the next and after a couple of weeks I realized that I was putting it off. One day I sat at my office and crossed off everything else on my list. That never happens. Never. But at the beginning of the day I made a list of all of the things I needed to do before I would call and make the appointment. I accomplished the list and sat at my desk and looked at the last item: “Call Swedish for appt.” Hmmm…. Nope, not today. Maybe tomorrow.
Finally…they started to call…First my angel Monica, my general practitioner’s wife and nurse… and I didn’t return those calls. And then Swedish started to call and still, I waited. Finally while copying down the number for the 2nd time that week and listening to the message I had to admit to myself that there was a reason why I wasn’t calling them back and for the first time since all of this started I had to admit to myself that I was scared. I was really, really scared.

I had my appointment last week with my oncologist and I cried in front of her for the first time since she met me. Good Lord… is it apparent to anyone else out there that I am a little slow on the uptake? Jesus. Now????? I have tears now??????
She asked me how I was and I started with my bullshit line of…. “Fine…I’m great… doing great.” What is it about me that craves the title of being the easiest patient in her roster…. No problems from little me… I’m even sensitive to the fact that she has fourteen other bald patients in the waiting room and that I should hurry up in case they’re sicker than I am and need more of her time. Good God! But about the third time I told her I was fine, she called bullshit and I cried.

I told her that I was scared of the appointment. Scared of her and what she might say. I was scared for my babies and I told her that in every other appointment I felt as though I was strong enough to take anything she threw at me. But in this case, for this appointment, in my heart I felt that I wasn’t …. Strong enough that is… and that if she came back into that room with her clip board and gave me that look again… that look… I know that look…. That I would fold inward….. and fall…. and fall and keep falling and that I would not recover… because I just don’t, at this moment anyway… have it in me to begin again.

So I held off on writing this chapter, it’s been in here all along, perfectly formed… but I didn’t want to put it on paper until I knew the outcome… so here it is.
My check up went great. I am well… my blood work is rebounding and I am healing.

But maybe, even better than that knowledge, is the feeling that I had sitting with another soul who understands where I am right now. In that room on the 2nd floor of the Swedish Cancer Center, past the waterfall and the quote from Emily Dickenson, up the stairs and past the fish tank, through the door and onto the scale, down the hall and into the exam room. In that room, in my chair ( I don’t like to sit on the exam table because it makes me feel weak and she knows it), with tears streaming down my face…I felt relief… because she knows…she knows all of it. She told me that I could hide it from most of you because I didn’t lose my hair and I stayed away on my worst days and reported only what I wanted you to know…but she knows… she knows it because she is the one who prescribed it….my hell… and she even knows that I feel worse emotionally now than I did then… and that I am more scared now than I was then… and that now, that I am finished with the business of just staying alive, it occurs to me that I was sick and the enormity of all of it just buckles my knees.

In my time line I thought that I would report to you now that I am better, and feeling better and moving on…so I have been so disturbed by the fact that I can’t write any of that to you. It’s simply not the truth. And to be honest, I was disgusted with myself because of it. For God sake, just get over it and move on. But I can’t. So when she looked at me in my little cancer room, and told me that she knew, she knew. I couldn’t help but cry… the relief of it all was so stinking overwhelming that I cried…more because I was grateful that she got me than because I was scared. “Normal” means nothing to me now, or maybe so many things that I can’t bring it in focus, but still she said the word “normal” and though I don’t know what that is anymore, still, the hope of it made me grateful and I asked her to say it again. “This is normal,” she said: “This is normal, and you are normal, and it is what you should be feeling and everyone else who comes in here after going through what I know I just put you through feels the same way.”
Oh. My. Lord. I’m normal. This is normal. My reaction is normal…
I haven’t failed this test… I get more time….and in time she promises that I will process all of it and I will move on from it…. but I need more time, and more rest… and maybe even more tears…. but it will come. She promised.

Love to all of you
j

Chapter Thirty One

Chapter Thirty One – January 27, 2008
Ribbons of laughter.
So that’s what I keep thinking about this week. I had this experience at a cabin among friends which is always good for the soul. I believe in my heart that this is what possibly plagues those who are landlocked and citified. I believe that perspective is always restored in a cabin among friends….this is particularly therapeutic when the cabin sits between the shore and the forest and is stocked with a plentiful supply of food, alcohol, gossip magazines, and firewood.
So I was running around town the morning we left….. chores to do and things to get ready in addition to the Saturday morning “kid schlepping” which is part of my world. I try to pretend I don’t enjoy this part of my life but to be perfectly honest I do…I love it. Yes, I am frantic, and sometimes grouchy when faced with a tight schedule and missing shin guards, swim suits, tutu’s and gymnastics gear… but if you all promise not to tell, I will let you in on a secret. I love being a mom, and love being a mom on Saturday mornings while schlepping my kids to all of their adventures, all the while feeling grateful for the purpose they give me and the title that I am most honored to bear. I am “Shawn and Campbell’s Mom.”
Anyhoo – so on that particular morning I was VERY busy as I had to make several stops before we were to be picked up on the beach at Settlers Cove. About half way through my morning I had to remind myself to breathe in and out so as to avoid having a stroke between rushed sips of coffee while throwing gear at my children in the back of the car and shouting things like: “For God’s sake, just put the leotard on!”

My friends give me a hard time for the way that I take care of them. I like to cook for them and I like to watch them come to my home or to the Sande Cabin and I like to watch them relax and enjoy themselves. It’s one of my favorite things. So I think people are under the misguided notion that I do all of that work for them. The reality is that I do it for very selfish reasons. I surround myself with people that make me laugh and in exchange for my time and my mom’s recipes; they give me so much more than I give to them. They make me laugh… and often… they give me that when I need it the most. So that morning when I was cursing at myself for not being more organized and trying to figure out in my sluggish chemo brain whether I could physically accomplish all of things still on my list before the pick up boat left the shore and wondering if my mother was right when she said that I just keep my schedule this busy because I obviously hate myself and am trying to punish myself for unnamed sins. I thought of that and then I thought of what I wanted to get out of the weekend and why I felt like I needed to go at all.
It was so simple really, so simple that I said it out loud…“Laughter… I am going to the cabin for laughter.” Yep, splendors of the simple sort… I was going to the cabin to get from my friends what they give me best… laughter.

Oh my Lord! I love Southeast Alaska. I talk about it all the time. You all know it, I’m a Southeast girl at heart and I do so love being an Alaskan, but more specifically, I love being from Southeast and I believe that if you come from this region that I can relate to you in some way… what is that Emily Bronte quote that’s so fantastic? “Whatever it is that our souls are made from, yours and mine are the same.” I probably crucified that quote. Anyhoo… you get my drift. But sometimes we get busy and we drive to work and we drive home without looking to the water…or we get in the boat and we forget to take a deep breath and capture the salt air in our lungs and hold onto it for a second… we forget. I was lucky because it had been awhile since I’d been on a boat and so I couldn’t help but be overwhelmed with my surroundings. I do so love Southeast Alaska, and I especially love it when I am in a boat and I have a beer and the wind and the waves and the greens and blues make such a powerful statement that you realize they feel like an old friend that you haven’t seen in a long time and you feel yourself rushing into them.

Campbell Rose and Sean loading up after a weekend at the Mitchell's Cabin

You know what inspired me? There were lots of really good moments…fireside on the beach, stories in a hot tub, sleeping in bags side by side with friends, listening to really good music… but I had this moment that I kept, it was the kind of moment that you look at and then close your eyes so that you can capture it, and tuck it away in your heart as a snap shot of your life. As everyone was situated, eating good food and enjoying each others company I looked around the room at several different conversations all going on at once and I listened as they laughed. All of these independent conversations going on about different things, but the room was filled with it. Laughter. From my seat next to the little wood burning stove the laughter sounded as though it was floating. I closed my eyes and imagined what it would be like if there was a ribbon tied to each laugh… bright colored streams of satin floating between us, binding us together, and filling the room with extraordinary hope.

Love to all of you,
j

I am so grateful to my little blog Angel in Anchorage who set this up for me. Through the site complete strangers and old friends from college have found me and it makes me smile to think of all of you and the way our lives have intersected. I hope to write all of you individually when I get a chance but until then thanks for keeping in touch.

Chapter Thirty – January 10, 2008
The problem with only sitting down at a computer to put my thoughts on paper once a month is now as you read these you might find them even more schizophrenic than they were before. But still….my brain is full so here are my disjointed ramblings as they come tumbling out around me.

Do you know what absolutely freaks me out about death? What brings me sadness and pain and regret? My Grandma died over the holidays and I traveled down to her home town for the funeral. I walked into the church where I received my First Communion and attended countless Catechism classes and expected to be completely devoid of emotion. I expected it because I work with old people and I know that I will lose them. I knew my Grandma was not well and I felt good about the way I had told her over the years that I loved her. I expected then that when I stood at her coffin I would feel nothing. But something very different hit me as I stood over her. Instead I noticed the pink flowers stitched on the pillow near her head and I thought about how my aunt did a lovely job picking out the coffin. There was embroidery on the lining that was reminiscent of the pillow cases she used to make us when we were small. I noticed her dress and realized it was the same one she wore to my wedding 12 years ago. I looked at her hands and though they were bruised from the I.V. I could still picture them shuffling cards and making cookies…..I opened my mouth to speak…. to tell her all of those things…I literally opened my mouth and took a breath as if my heart had not processed what my brain was telling it. I had to catch myself from speaking out loud to my Grandmother at her viewing because I hadn’t yet realized that she was really gone. Any opportunity I had to tell her something was gone… and it came crashing into me….. my shoulders weighted down by the sheer impact of how final death is and how there are no second chances to get it right. When people die they say we keep a piece of them with us….but all I could think about standing at the alter to deliver a reading in her honor was that we may find comfort in the ways that they changed us, memories we hold that are pleasant, however, death takes from us too. The person we were before….someone’s granddaughter, daughter, wife, mother, friend…. As we lose the people we care for we lose those relationships as well….and it changes us and leaves us somehow less than we were before. I used to have a woman in my life who loved me because I was her granddaughter and she was proud of me and enjoyed her time with me and she laughed at my ridiculous stories and I was her granddaughter and now I’m not anyone’s granddaughter and it’s a strange…sad…. permanent place to be.

My surgery in December went well and I’m recovering. Honestly it was easy, uneventful and comparatively speaking, pain-free. I am so excited to have the tissue expanders removed. They were never comfortable, not designed to take up residency in any body for long and so even in recovery directly after the surgery I woke to hear myself say: “Oh My…. That feels much better.” I’m not quite done yet, four more procedures I think before I am “anatomically correct” but hopefully no more surgeries. I’m still getting used to the implants. The size and shape of them keep changing as swelling goes down and they settle. They were the perfect size two weeks ago and have grown substantially since then. Eek…..I’m starting to look like I was stung by a bumble bee. But as I found myself anxiously changing shirts in my closet the other night before guests arrived for dinner…I could feel myself getting worked up… “Are they too big?” “What will people think of them?” The absurdity of worrying about what others think hit me and I gave myself permission to just be happy with whatever they end up being. I thought about the pain of the Mastectomy, the blood, the incisions the recovery. I thought about the reconstruction and the stretching of muscles and skin and the excruciating pain that I hid from all of you but that would leave me rocking in place, over medicating in the hopes of relief or death and in those moments I hurt so bad that I honestly didn’t care which came first. So leaning against a wall in my closet that night, thinking about all of that, I put on my shirt and without looking in the mirror walked out of that space and into another, completely carefree of any judgment that may come my way. I have the peace to know at least I have the most politically correct boob job around, whatever they are or turn out to be, they were hard earned and therefore anyone who doesn’t like it or me because of them can bite me.


The end of the year continued to provide trauma for our little community. More deaths, sickness, and hurt. I was anxious for 2007 to be over and continue to be hopeful for the New Year, that it will provide a different point of view than its predecessor…. Though as I run every day and try to sort it out in my head the only thing I know for sure is how little I actually know. When I was in my 20’s I was so sure I had all of this figured out. That Life was about choices and you made the right choices and therefore walked down the right path and if you did those things correctly then tragedy and trauma would not find you. Now I realize that I know nothing. That life is less about avoiding pain and more about how you handled yourself when faced with it. I keep telling people who call and ask for advice that I am confident that I only know two things for sure:
1) God loves us and wants us to experience real joy. When we laugh, I believe he does too.
AND
2) When faced with the inevitable pain that life also dishes out, we are meant to be here to comfort each other and step through the pain together and back into the light of joy.

In my 33 years…. That is all that I know for sure…. The rest of it is transient debris…. blowing past me, but those two things I know for sure.

So I’ve been thinking about love too…. True love that is…. This month I’ve been filled with thoughts on death and dying, cancer, recovery, and love. How’s that for a mouth full. Anyhoo – The love thing has been haunting me since before Florida actually but then an incident occurred with my daughter that I keep spinning in my head.
My daughter has many, many, many treasures. They all hold significance in her life. I’ll give you the other version to help you put it into perspective. My son has received hundreds of gifts throughout his life. He remembers very little about who they came from and he holds almost no emotional attachment to them what so ever. When told to go through his toys to find things to donate to those less fortunate he will take a Hefty bag and start filling it randomly in his room until it is full. I then have to go through it and haul out the Woody doll given to him by my sister when he was two and the Harry Potter figurine and the books that he still loves to read etc. “Stuff” holds no meaning in his world. My daughter on the other hand still has the wrapper that her favorite doll came in AND she claims to NEED it and will fall crying to the ground when you threaten to dispose of it. Cleaning her room means doing it when she is off the premises or asleep.

So recently something tragic happened to one of her prized possessions and Campbell’s heart was broken. You have all heard about her “ONETRUELOVEGRADYMICHAELSKILLINGS” who she claims proposed to her in preschool and who she still says she plans to marry someday. When I was first diagnosed, Grady, who comes from a long, proud, line of Republicans brought Campbell a stuffed elephant from his collection to comfort her when her mommy was sick. She treasures “Ellie” and is despondent when he is occasionally lost for brief periods under the couch or behind a chair.
So against our better judgment, Campbell packed Ellie on our most recent trip to Florida. After an exhausting day of shopping we headed to the check out line with carts filled with sun screen and floaty toys and snacks….as we were loading the cart again to leave the store we turned to see Campbell’s purple/red face twisted in anguish with SILENT tears streaming down her chin. I can tell you in my life with that child that I much prefer shrieking screams to silent tears because when the tears come without sound I know that the shit has seriously hit the fan.
I immediately shifted into “impatient, grouchy, demanding mommy” which is what I do when I am fearful that one of my children is in real pain. “What’s the matter?! What happened!? WHAT IS WRONG!?” My stomach turned as I realized what she was trying to say was that she left Ellie somewhere in the store and had no idea where. I immediately conducted a virtual tour of the store in my brain…of all of the places Campbell and I had been, all the aisles that we had perused and the sheer square footage was daunting. Exhausted, I pulled her from the cart and immediately began the back tracking process, of course, without success. We went to sleep that night and for many nights after to her cries…”My Ellie… My Ellie….he needs me… and I miss him and I love him and without him I will never be the same.”
I know this sounds ridiculous to most of you but I hope you understand that it has almost nothing to do with a lost stuffed animal and so much more to do with the emotion behind losing what you know in your life is true and feeling that love is lost. As I would hold her at night…clean from a bath, smelling like a sweet little girl in fresh jammies…she would cry silent tears into her pillow and tell me her heart hurt. I would cry with her and tell her I understood what that felt like and I was sorry I couldn’t fix it. After she would cry herself to sleep Trevor and I would stay up talking about that feeling… times in our lives when we lost something that couldn’t be replaced and how painful that was, still is… for us as adults.
Once we returned home Campbell would still ask about Ellie every day…. Ask if I thought he was okay, if I thought he missed her too…Did I think he was safe, warm, dry, happy….still loving her? As I said, it’s been a hard year for everyone and as I would answer her every day I would vacillate between wanting to make it better and thinking that life is about lessons and she would learn from this. One day when she asked me to call the store and see if they had found him yet I told her about my childhood and how I had a stuffed monkey that I loved so much his head had fallen off three times and my mom sewed it back every time with a different colored thread so he eventually had red and black and green stitching all over him. I told her how he wasn’t cute and in fact was a real mess but I loved him anyway and then one day I left him on a float plane when we flew back to camp and how I cried myself to sleep every night just like she was. I told her what my dad said to me. That my monkey was probably found by another little kid who really needed a friend and that maybe it was okay that my monkey was with another family now bringing someone else as much happiness as he brought me. I told her that story as a last ditch “Dear God please get over this trauma” kind of a story. And this was my daughter’s response. “Mom, I guess that is a nice thought. That someone else was taking care of your monkey and loving it and hugging it and talking to it just like you did. But wouldn’t it have made you feel better if your mom and dad had just gone back to find it or called the airplane people to see if they had a lost and found? Wouldn’t that have been even better?”
So here’s my thought folks. I believe that my children in their lifetimes will face pain. I believe that there will come a time when I am no longer here to comfort them or try to fix it… but the simple fact of the matter is that for today anyway, I am here… I can make it better and to be perfectly honest… she has a point….so a computer and a credit card were employed upon our return and Ellie arrived in the mail yesterday, safe from his travels. Though all Campbell needs to know is that the store in Florida found him and sent him home, where he belongs. Tonight when she goes to bed Ellie will be there to greet her and I am inspired today by the thought that a broken heart is mended and true love restored and at least for one little girl in our household… happy endings abound.
Love to all of you.