Shawn Patrick, Mommy, Campbell Rose and Mimsy walking around the lake while Daddy plays shutterbug.May 22, 2007 –
Chapter Eleven
LOST: One brown transgendered rabbit. Answers to “Mimsy”. Last seen wearing orange vinyl Go-Go boots and a cheerleading uniform while climbing a tree in the vicinity of Ward Lake. Reward: Entire contents of piggy bank. If found please call Campbell Rose.
So that was the ad I was formulating in my head yesterday on the way to the Lake to see if the stinking bunny was still in the tree. The night before our household fell asleep to cries of: “MY RABBIT!! MY RAABBIITT!! He’s all ALONE at LORD LAKE!” (I never correct her on the pronunciation because I think it’s cute.) I figure it’s nothing that a good speech therapist can’t take care of when she’s a teenager. Anyhoo -in heels and a skirt Campbell and I waded through the bogs. As the mud came squishing through my shoes I decided that peep toes are possibly not as practical for SE Alaska as I thought they were when I purchased them though DAMN cute. My dolly was leading the way because only she knew where she had placed him and as she ran ahead I heaved a sigh of relief when I heard her shriek: “I see an orange boot! I see an orange boot!” She shimmied up the tree which made me realize that I should watch my child more closely because we spent the entire day at the Lake this weekend and I had no idea she could A) climb a tree and B) was in fact climbing the tree in question one handed while clutching the asexual rabbit. Ahhh.. so all was well with the universe again and as we drove back to town I heard her conversating with her companion. “Poor Mr. Mimsy, Poor, Poor little Mimsy… were you so afraid that I wouldn’t come back for you. I’m here now little one.. I’m here.”
She was just so relieved and so content in that moment. It made me think about being a kid and what it is about childhood that is both our gift and our burden to overcome in later years. It seems like when I am at my worst I am longing for the same feeling of home that I had as a child. The things that are familiar and comforting, and the people who understand me. I also crave the freedom that I think can only come to those who are young. You know the feeling of pedaling your bike so hard that it seems like your flying, or hiding in the softest parts of the forest, or floating on your back in the warmest part of the bay. I tried to think of the things that make me feel home or the things that make me feel free again… the list is short but I am of the mind that I should do those things more often.
You know, I read something this week that really freaked me out. People magazine is a staple at our house now because I can’t read anything worthwhile..Seriously..I grab a Vanity Fair now when I am flexing my mental braun…otherwise it’s just me, my feeble brain and People magazine.. so I’m reading this article and they are featuring some singer who I have never heard of before and talking about her “battle with cancer”. Okay, so I read on: ‘Early Stage Breast Cancer’ and I think “Yep, that’s me.” Then they print: ‘Lumpectomy’ and ‘Reconstruction’ and I think “Mastectomy for me, but close and Yep on the Reconstruction” and then I read: ‘Fighting for her life’. I actually feel my brain skid to a halt and slam up against my forehead. Hmmm... I reread the article thinking I missed the part where she ALSO has stage four pancreatic cancer.. but no, just the early stage breast cancer and then I think.. did somebody forget to tell me something?
I have this love/hate relationship with float planes. I love them because they remind me of going home and I could sit on a dock and watch them take off and land for hours…and I have. There is something about standing on the dock and watching it taxi towards me that has always given me a rush...part poetry in motion and part home… but unfortunately float planes were also a necessary mode of transportation for Logging Camp life. It seemed to me then anyway that this necessary transport usually occurred in the fall and usually when one of us was sick and in need of medical attention therefore opting out of the trip was never actually an option. I always remember it the same… raining and blowing sideways...the lines holding the dock are screaming from the strain..the pilot is struggling to load passengers while holding on and it was with dread that I climbed aboard. The pilots became part of our family over the years and I learned to trust them…and I learned that when in doubt, when in the middle of a nightmare of a storm..one should always watch the pilot. I would get scared when they were scared but not before… otherwise hold on and trust that they would deliver us safely… ‘Fighting for my life’ – Definitely Not. Possibly just stuck in the middle of another storm with poor visibility…I have faith that the Pilot will get me where I need to go…
I stand in the grocery store now with my cart and turn in circles and continue to do so until the reason I came into the store dawns on me. Sometimes it comes to me and sometimes I just get frustrated and leave. But usually not before purchasing many other things that I don’t need in hopes that maybe one of those things is what I came for… usually I’m way off, like pickled beets and garlic mushrooms when I really came for bleach and garbage bags. Also –this week there was The Ham. It’s not Easter…the number of people in my household has not doubled and yet there it is, a Ham. It seemed appropriate at the time. Why? I cannot tell you.
A friend of mine told me in an e mail this spring that she thought I needed to get better at asking for help. She was right and I’m glad she had the courage to tell me so. I knew it then and know it now, but that doesn’t make it any easier for me to change my behavior though I thought the advice was good and I am working on it.
When I think about needing help I picture myself walking up a long logging road. I picture it in the earliest part of the evening when the light is starting to change and there are more grays than blues... the road is rough as all logging roads are and I am walking with some of you. I am a little ahead of the group, some of you are talking with each other and some of you are watching me and some of you are watching the trees but you are all walking behind me. When my footing becomes less firm and I stumble one of you wordlessly comes behind me and props me up until I am steady and we continue on…together. She’s right, I should ask more but just in case I don’t learn to become proficient at it by the time this walk together is over, thank you to those of you who have noticed me slipping and who have gently put yourselves next to me and held me up when I needed it.
I am happy to report that I am getting better at asking, just not very quickly and not very coherently. Friday night I didn’t really want to be alone. But I didn’t have the energy to put a gathering together and most of my friends especially those with kids need some advance notice. So here is my version of asking for help.
“This is Julie. It’s 8:30 on Friday night and I was thinking of cooking a Ham, and making a potato salad and baking apples for dessert. So dinner at 10:00 and dessert at midnight. Come if you can.” What I was really saying was: I feel sick and when I feel sick I get scared and when I’m scared I feel alone and the worst part of feeling like that is not being able to go to sleep and so the hours drag by. Will you come over and make me laugh until I feel like I can sleep? And so they came… and they ate ham…and baked apples at midnight and they made me laugh. And I pictured the logging road and the walk…with all of you and I was inspired by those of you who continue to prop me up even when I’m not good at asking.
May 29 2007– Chapter Twelve
Julie’s Stinking Cancer Update: Tomorrow will be number seven of twenty five weeks of chemo. The worst of the side effects at the moment are caused by one of the two I-V medications I get at the hospital weekly. We think it is the 5-FU and not the Methotrexate which is causing extreme sensitivity to light which means even with my sunglasses on my eyes feel like they are constantly being scalded by light and equally disturbing is the fact that I now look like a rabbit most of the time. I frighten small children. Seriously. I have to say that it is a blow to ones ego to have children run from you. Anyhoo – this week has been better with regard to the tachycardia (also caused by the 5-FU) but at the moment I am opting to avoid the beta blocker family of meds. Mostly just that they would slow me down and to be honest I just can’t imagine moving slower than I am now. I may have to get there but just not this week. My counts are surfing on the verge of being “less than desired” and the trend is unfortunately still dropping week by week but so far I am still in the “okay for treatment” category in terms of lab work. So the Cancer Crap in a nutshell for the week is that I’m doing okay.
So here’s the deeper perspective I have gained for this chapter: Being paranoid that one is going to be eaten while trying to have a bowel movement is a really disturbing way to go through life. I may have cancer but that in my book is worse.
My mom called today to say that something “really bad” happened. So that you understand the depths to which my stomach plummeted you should first understand the following: My dad has leukemia, I have breast cancer, my mom fell and broke her foot last month, my niece fell and broke her arm last week, my sister who was pregnant went to the hospital over the weekend with a kidney infection and my beautiful nephew was born this morning with complications and was transported to another hospital in Anchorage where he is currently in the NICU.(Prayers please) However, in our family, none of that is as bad as what happened to Winston (dad’s Shi Tzu who he treats like a third child and who is named after his favorite brand of cigarettes). So the dog was out doing his doodie in the yard while my mother with broken foot elevated was on the phone with my sister. She watched as an eagle swooped down with talons extended and tried to snag poor little Winston who sensing the peril prematurely finished his “job” and scurried under the deck. But here’s the deal: I have been joking that unless you are actively dying in our family your injuries don’t count. I think that’s funny – no one else does. But I was thinking about poor little Winston who my mother said is cowering under a chair barking at phantoms in the living room while the eagle sits in a tree just outside the back door. And I was thinking that out of all of the suffering souls in our family, Winston’s is by far the worst. We should all think of him the next time we are enjoying the peace and privacy of our toilets and think about what that must feel like the next time his bowel or bladder kicks in and he HAS to go outside to do his business. There are some things that take a fair amount of relaxin
g to be able to do and I just can’t imagine what it would feel like to know that some monster in a tree is waiting for you to drop your drawers and your guard so he can attack you with razor like talons. Breast Cancer, not so bad. It sucks to be Winston.
Winston and Julie’s niece Kristiana
LOST: One brown transgendered rabbit. Answers to “Mimsy”. Last seen wearing orange vinyl Go-Go boots and a cheerleading uniform while climbing a tree in the vicinity of Ward Lake. Reward: Entire contents of piggy bank. If found please call Campbell Rose.
So that was the ad I was formulating in my head yesterday on the way to the Lake to see if the stinking bunny was still in the tree. The night before our household fell asleep to cries of: “MY RABBIT!! MY RAABBIITT!! He’s all ALONE at LORD LAKE!” (I never correct her on the pronunciation because I think it’s cute.) I figure it’s nothing that a good speech therapist can’t take care of when she’s a teenager. Anyhoo -in heels and a skirt Campbell and I waded through the bogs. As the mud came squishing through my shoes I decided that peep toes are possibly not as practical for SE Alaska as I thought they were when I purchased them though DAMN cute. My dolly was leading the way because only she knew where she had placed him and as she ran ahead I heaved a sigh of relief when I heard her shriek: “I see an orange boot! I see an orange boot!” She shimmied up the tree which made me realize that I should watch my child more closely because we spent the entire day at the Lake this weekend and I had no idea she could A) climb a tree and B) was in fact climbing the tree in question one handed while clutching the asexual rabbit. Ahhh.. so all was well with the universe again and as we drove back to town I heard her conversating with her companion. “Poor Mr. Mimsy, Poor, Poor little Mimsy… were you so afraid that I wouldn’t come back for you. I’m here now little one.. I’m here.”
She was just so relieved and so content in that moment. It made me think about being a kid and what it is about childhood that is both our gift and our burden to overcome in later years. It seems like when I am at my worst I am longing for the same feeling of home that I had as a child. The things that are familiar and comforting, and the people who understand me. I also crave the freedom that I think can only come to those who are young. You know the feeling of pedaling your bike so hard that it seems like your flying, or hiding in the softest parts of the forest, or floating on your back in the warmest part of the bay. I tried to think of the things that make me feel home or the things that make me feel free again… the list is short but I am of the mind that I should do those things more often.
You know, I read something this week that really freaked me out. People magazine is a staple at our house now because I can’t read anything worthwhile..Seriously..I grab a Vanity Fair now when I am flexing my mental braun…otherwise it’s just me, my feeble brain and People magazine.. so I’m reading this article and they are featuring some singer who I have never heard of before and talking about her “battle with cancer”. Okay, so I read on: ‘Early Stage Breast Cancer’ and I think “Yep, that’s me.” Then they print: ‘Lumpectomy’ and ‘Reconstruction’ and I think “Mastectomy for me, but close and Yep on the Reconstruction” and then I read: ‘Fighting for her life’. I actually feel my brain skid to a halt and slam up against my forehead. Hmmm... I reread the article thinking I missed the part where she ALSO has stage four pancreatic cancer.. but no, just the early stage breast cancer and then I think.. did somebody forget to tell me something?
I have this love/hate relationship with float planes. I love them because they remind me of going home and I could sit on a dock and watch them take off and land for hours…and I have. There is something about standing on the dock and watching it taxi towards me that has always given me a rush...part poetry in motion and part home… but unfortunately float planes were also a necessary mode of transportation for Logging Camp life. It seemed to me then anyway that this necessary transport usually occurred in the fall and usually when one of us was sick and in need of medical attention therefore opting out of the trip was never actually an option. I always remember it the same… raining and blowing sideways...the lines holding the dock are screaming from the strain..the pilot is struggling to load passengers while holding on and it was with dread that I climbed aboard. The pilots became part of our family over the years and I learned to trust them…and I learned that when in doubt, when in the middle of a nightmare of a storm..one should always watch the pilot. I would get scared when they were scared but not before… otherwise hold on and trust that they would deliver us safely… ‘Fighting for my life’ – Definitely Not. Possibly just stuck in the middle of another storm with poor visibility…I have faith that the Pilot will get me where I need to go…
I stand in the grocery store now with my cart and turn in circles and continue to do so until the reason I came into the store dawns on me. Sometimes it comes to me and sometimes I just get frustrated and leave. But usually not before purchasing many other things that I don’t need in hopes that maybe one of those things is what I came for… usually I’m way off, like pickled beets and garlic mushrooms when I really came for bleach and garbage bags. Also –this week there was The Ham. It’s not Easter…the number of people in my household has not doubled and yet there it is, a Ham. It seemed appropriate at the time. Why? I cannot tell you.
A friend of mine told me in an e mail this spring that she thought I needed to get better at asking for help. She was right and I’m glad she had the courage to tell me so. I knew it then and know it now, but that doesn’t make it any easier for me to change my behavior though I thought the advice was good and I am working on it.
When I think about needing help I picture myself walking up a long logging road. I picture it in the earliest part of the evening when the light is starting to change and there are more grays than blues... the road is rough as all logging roads are and I am walking with some of you. I am a little ahead of the group, some of you are talking with each other and some of you are watching me and some of you are watching the trees but you are all walking behind me. When my footing becomes less firm and I stumble one of you wordlessly comes behind me and props me up until I am steady and we continue on…together. She’s right, I should ask more but just in case I don’t learn to become proficient at it by the time this walk together is over, thank you to those of you who have noticed me slipping and who have gently put yourselves next to me and held me up when I needed it.
I am happy to report that I am getting better at asking, just not very quickly and not very coherently. Friday night I didn’t really want to be alone. But I didn’t have the energy to put a gathering together and most of my friends especially those with kids need some advance notice. So here is my version of asking for help.
“This is Julie. It’s 8:30 on Friday night and I was thinking of cooking a Ham, and making a potato salad and baking apples for dessert. So dinner at 10:00 and dessert at midnight. Come if you can.” What I was really saying was: I feel sick and when I feel sick I get scared and when I’m scared I feel alone and the worst part of feeling like that is not being able to go to sleep and so the hours drag by. Will you come over and make me laugh until I feel like I can sleep? And so they came… and they ate ham…and baked apples at midnight and they made me laugh. And I pictured the logging road and the walk…with all of you and I was inspired by those of you who continue to prop me up even when I’m not good at asking.
May 29 2007– Chapter Twelve
Julie’s Stinking Cancer Update: Tomorrow will be number seven of twenty five weeks of chemo. The worst of the side effects at the moment are caused by one of the two I-V medications I get at the hospital weekly. We think it is the 5-FU and not the Methotrexate which is causing extreme sensitivity to light which means even with my sunglasses on my eyes feel like they are constantly being scalded by light and equally disturbing is the fact that I now look like a rabbit most of the time. I frighten small children. Seriously. I have to say that it is a blow to ones ego to have children run from you. Anyhoo – this week has been better with regard to the tachycardia (also caused by the 5-FU) but at the moment I am opting to avoid the beta blocker family of meds. Mostly just that they would slow me down and to be honest I just can’t imagine moving slower than I am now. I may have to get there but just not this week. My counts are surfing on the verge of being “less than desired” and the trend is unfortunately still dropping week by week but so far I am still in the “okay for treatment” category in terms of lab work. So the Cancer Crap in a nutshell for the week is that I’m doing okay.
So here’s the deeper perspective I have gained for this chapter: Being paranoid that one is going to be eaten while trying to have a bowel movement is a really disturbing way to go through life. I may have cancer but that in my book is worse.
My mom called today to say that something “really bad” happened. So that you understand the depths to which my stomach plummeted you should first understand the following: My dad has leukemia, I have breast cancer, my mom fell and broke her foot last month, my niece fell and broke her arm last week, my sister who was pregnant went to the hospital over the weekend with a kidney infection and my beautiful nephew was born this morning with complications and was transported to another hospital in Anchorage where he is currently in the NICU.(Prayers please) However, in our family, none of that is as bad as what happened to Winston (dad’s Shi Tzu who he treats like a third child and who is named after his favorite brand of cigarettes). So the dog was out doing his doodie in the yard while my mother with broken foot elevated was on the phone with my sister. She watched as an eagle swooped down with talons extended and tried to snag poor little Winston who sensing the peril prematurely finished his “job” and scurried under the deck. But here’s the deal: I have been joking that unless you are actively dying in our family your injuries don’t count. I think that’s funny – no one else does. But I was thinking about poor little Winston who my mother said is cowering under a chair barking at phantoms in the living room while the eagle sits in a tree just outside the back door. And I was thinking that out of all of the suffering souls in our family, Winston’s is by far the worst. We should all think of him the next time we are enjoying the peace and privacy of our toilets and think about what that must feel like the next time his bowel or bladder kicks in and he HAS to go outside to do his business. There are some things that take a fair amount of relaxin
g to be able to do and I just can’t imagine what it would feel like to know that some monster in a tree is waiting for you to drop your drawers and your guard so he can attack you with razor like talons. Breast Cancer, not so bad. It sucks to be Winston.Winston and Julie’s niece Kristiana
You know, there are some things I think are worth celebrating and some things I don’t. As an adult I have never really cared for celebrating my birthday. Really. It was always kind of a let down. There is simply no beating my best birthday which took place when I was four. Why try to out do that which has already occurred with perfection? White frosting with chocolate chips, a cradle and a dolly whose dress was covered in little pink roses, a new turquoise outfit with matching plaid pants (my pot belly was particularly fetching in that little getup), and my friends (who happened to all be first cousins – go ahead, make all the assumptions you want to with that one) and the general sense that I was special and it was all about me, and me, me, me. Am I the only one that thought they could possibly be a child prodigy? I always felt like I would be…and the fact that I wasn’t particularly good at anything didn’t get in the way of my dreams of greatness. It wasn’t until I was a teenager that it dawned on me that possibly being a genius at anything meant that I first needed to be good at something and since that wasn’t happening I wrapped my brain around the concept that I was incredibly average.
Some of you might be feeling sympathy for me now and think that my lack of adeptness to extracurricular activities might be because of a general lack of exposure what with logging camp rearing. But no, you are wrong – my lack of talent had absolutely nothing to do with exposure. In fact quite the opposite, I think by now you have all heard the stories about my sister and I growing up prey to the Southeast Island School District and all the proactive measures they subjected us to so as to avoid rearing hordes of “bush” children who were socially misfit (again, I would like to draw reference here to my cousins) and therefore a blight upon the forward thinking educators of our fair state. It was with this in mind that I am assuming they came up with the “program” in which we were given lessons in fencing, square dancing, sewing, typing, automobile repair, music, and the list goes on and on and on.
I didn’t know what a crosswalk was but I could fence better than any other 8 year old on the island. Technically speaking I was the only other person in that particular age group but still…
I only bring all of that up because for years now I have viewed my own birthday as an annoyance. However, now, what with “Cancer” and all I was thinking this might be a good year to revisit my whole “child prodigy” theory. Obviously I cannot be the 12 year who just graduated from Harvard nor the 9 year concert pianist but possibly the 33 year old who decided that spending a day celebrating all of the years of me is possibly not a gigantic waste of time and that during that celebration I might spend a little bit of time thinking about what it is exactly that I no longer believe in, what it is that I do, and who I want to be when I grow up.
Do you ever think about your soul? The things that move you and the things that are a part of you no matter where you go? I think about that a lot now, I don’t have mine figured out. I mean just because I think of it more doesn’t mean that it all suddenly makes sense. I do know that there are somethings that I cannot be without. One of them is SE Alaska with it’s beaches and forests and cabins that are a part of me. And so this year I found myself celebrating me, on the beach with beer in hand. My toes were buried in sand and my little people were nearby. Campbell cuddling her newest family member “Kelp Baby” and Shawn learning the fundamentals of Knee Boarding from the resident Sande expert, his father. I was in the company of friends who have known me since I was a teen-ager and though there were people who I wished could have been there I was awfully darn thankful for the company that I did have. What I decided is that I arrive at my 33rd year feeling thankful for the 32 years prior to this one and hopeful that there will at the very least, be 32 more. I decided that I do NOT believe in: unpainted toenails, avoiding mud puddles, cutting carbs, wearing ugly shoes, ever, for any reason, I do NOT believe that kids should grow up listening to Barney music, and I do NOT believe that life can be navigated without a sense of humor. I decided I most definitely DO believe in rainstorms on cabin roofs, cocktails on porch swings, jammies and coffee, dancing in the woods, skinny dipping on clear nights, campfires and friends, music that moves me, red balloons and cake on your birthday and if not that then beer, sand, and lawn chair, I believe that brown rubber boots are beautiful and I believe that God gives us pain so that we are better able to understand the people around us and so that compassion becomes something we feel and believe and not just something we say because pain IS real and once you experience it you understand that the people around you who are also suffering deserve kindness no matter the source because pain like joy is universal and it no longer matters what caused it.
I am inspired this week by me and my 33 years. By my past and by my future and the hope that comes with still wanting to grow up to be someone or something and by the thrill of following my heart, wherever that may lead me.
Kashakes Memorial Day Weekend 2007
June 6 2007 – Chapter Thirteen
It’s official… I’m pregnant. I’m just joking… physically impossible for a variety of reasons which I won’t bore you with. However, I am enjoying the exact same foods I craved while pregnant with both of my munchkins. I thought my cravings then were because of hormones but now I wonder if it has more to do with my nausea because my NEED for pickles, beets, and pickled beets are bordering on desperate and I’m afraid it won’t be too long before I start carrying them in my purse again. Lord! There’s a spectacular visual, me sloshing down the street with my assortment of pickled products in my “oh so cha-cha” hand bag. Great… Cancer levels another devastating blow to my already tattered ego.
Speaking of which… you should know that I used the F-word several times this morning. The hand full of hair that fell out in the shower didn’t send me into a panic but as I was blow drying it (I know – I admit it, I was using a contraband device – The Blow Dryer-but it felt SO GOOD) anyhoo – there I was in front of the mirror blow drying what is left of my mop and I saw something shiny. Normally shiny things make me giddy, kind of like Golum in The Hobbit. Not so this morning.
One of the positive benefits to chemo is that my hair growth has slowed to a grinding halt as has the growth rate of my fingernails. So if there was a silver lining here AND I was the kind of person who spends their day looking for it –which I am sure I do not have to tell you, I am NOT – but IF I was one of those ridiculous “happy go lucky” “the glass is half full kind of people” then I would say that the fact that I now only shave my legs when I have nostalgic feelings toward the smell of shaving cream in the shower is perhaps a positive point and a “glass is half full” moment. SO ANYWAY – (Good Lord! Can you tell it’s a chemo day and I couldn’t get to the flipping point if you people drew me a map?) So – I’m standing in front of the mirror and I think “What is that shiny thing on my head?” Then I think: “It can’t be.” Then I say: “There is no way God would screw with me in this particular fashion, on this particular level, today, a chemo day… I mean, not only am I not producing hair but the one hair that I have produced in the last 8 weeks is gray. GRAY?! FOR F-SAKE!” Of course, I was having this conversation out loud when Trevor encountered me and he proceeded to laugh so hard that I had to threaten to use the blow dryer as a weapon before he retreated to the shower where I could still hear him laughing. Cretin.
So I think this is perhaps a good transition to my next topic of the week which is Anger. After years of painful reflection I know a few more factoids about myself than I did in my 20’s. Most of them are FAR too painful to admit out loud or to put in print. However, there is one that I will share with you – though I hope we all have the general understanding that since all of this indepth reflection is one sided and since none of you have to reveal anything unattractive to me about yourselves I would hope that the following information would be kept between us and not used against me in future interactions. Here it is:
I do not get angry appropriately.
When faced with a situation that should really send me over the edge, I find myself completely devoid of emotion. I am usually smiling and I hear myself saying stupid things like “fine” “okay” “no problem.” It’s sometimes hours, days, or weeks before I process the information and then find myself inappropriately angry at the wrong situation. I like to think of myself as “special needs” in that department. My colleagues with degrees in psychology would probably counter with another term but we’ll leave it at “special needs” for the sake of this discussion and my fragile ego. So, anyhoo interestingly enough up until now, my cancer has not made me angry. I didn’t cry, yell or even have bad moments where I questioned why it happened to me. Even now, I don’t feel anything when I think about the costs that this disease has waged both on my body and our financial well being. I just don’t feel anything. However, when I found myself shrieking at construction workers last week as they tore apart the parking lot at the Pioneers Home without coordinating the project with me first it dawned on me that my “special needs” had perhaps reared it’s ugly head and that I might want to be aware that there were some “unresolved emotions” lurking on the surface of this sad, shallow little puddle of waters that should otherwise run deep, but in my case, clearly DO NOT.
So I am proud to report that I made progress this week when I realized that I was Angry. It was the kids last week of school and I was already feeling guilty because I was only able to visit with them in their class rooms for a short time because my blood work indicated that my counts were too low to allow me to volunteer for long. The next morning I was curled up in my chair and I was asking them about their days. Campbell was so excited to tell me about the talking stick, something that they all passed around the room so that each of them could share parting words to their fellow playmates. She reported that her boyfriend told the whole class that he was going to marry her when he grows up. I asked how the class and more specifically, Ms. Diana, took this information and she said “Ummm, I’m not sure. They all know already so I don’t think they were surprised.” I then asked her what she shared when it was her turn with the talking stick and I was smiling in advance assuming that it would be the mirrored image of Grady’s report.
“I told the class that my mommy is sick and she has cancer and has to take a medicine called chemo and that she might lose her hair but maybe not.” With shaking hands I put my mug down and turned my back so my child would not see the look on my face. I decided then that if cancer was a person and if it was sitting in front of me in that moment I would beat the crap out of it for the pure fact that the word “cancer” is in my children’s vocabulary which strikes me as incredibly grotesque and mean at the same time. I am not angry that I have cancer. I am not angry about the effects that it has taken on me and my body. I have never been a person to use the words fair or unfair with regards to what life has to dish out but in that moment when I thought of my babies and what they do or do not understand about this process and the fear that they have in their hearts I found myself thinking that life is not fair and I felt angry.
A while ago I found Campbell in my closet holding one of my skirts against her while swaying from side to side. She was wearing my heels which I love. I can always tell when she’s been in my closet because long after she’s deserted the space her favorite shoes of the moment are sitting in front of the mirror cockeyed and askew looking as if they were abandoned in a hurry and are awaiting her return. I was heading toward my closet when I heard her talking to herself… “So! How cute am I?!”
I stifled my laughter before I came around the corner. When she looked up and saw me she was startled though not embarrassed. I realized that this child has all the confidence she needs to get through life. I stood there and silently prayed that both of my children hang on to their belief in themselves and their dreams of greatness long after they leave childhood behind.
As I stood next to her in the closet I replied: “Dearheart, there is simply no one cuter.”
“Yes, I know mom.”
Parenting is kind of like a really cool science experiment with no supervision. I have this hypothesis with regards to raising them and how by applying certain values and strengths that will then equate into a good human being... I won’t really know how it panned out until they grow up. I think about it because for all of my good intentions I could really be messing up. Self-confidence is a big factor in my experiment because I want them to be self assured. On the flip side I could be raising these children who take confidence so far over the edge that the damage is irreparable and they end up neurotic and narcissistic. I’m hedging my bets and putting money away for therapy just in case I really screw this one up, kind of like Chemistry 101 where I left the Bunsen burner on too long and my beaker exploded.
A dear friend of mine sent me a card last week with a quote from Walt Whitman which I loved: “from this hour I ordain myself loos’d of limits and imaginary lines.” It made me wonder, what if we were loosed of our limitations or what we perceive to be our imaginary lines? What would we each become? I keep writing about “venturing out” and “following my heart” and I think it’s because this year for the first time in my life I have to admit that I do not have an endless supply of days here. I’m not being dramatic. Obviously, none of us do but we don’t have to look through that door until we are perhaps standing in front of it. I’m not saying that cancer is going to kill me because the simple truth is that this one will not. I’m just saying that for the first time in my life I have had to admit that there is a door and someday it will be my turn to walk through it. The door doesn’t bother me, standing in front it doesn’t freak me out, admitting that my assumption of old age may be off by a few decades doesn’t get me either. However, when its all said and done I do think what will matter to me is whether I succeeded in my parenting experiment and whether or not I was the kind of person who had the courage to dream and the courage to take those dreams out for a spin. Until now I have always been one of those irritatingly insecure people who when lost in a day dream about career plans or dream travels would find herself whispering words like “someday”. Until recently I could parlay that response into seeming legitimate. However, I now wonder if I can’t count on someday being a real date in the future which of those daydreams would I most regret never having had the courage to try?
Inspirations this week? Honestly…the chemo today has left my head feeling as if its been wrapped in cotton…though I know I found inspiration in every day I honestly cannot recall them now…remind me to write these on days other than Wednesdays from now on and how about a rain check?
Love to all of you….j
June 13, 2007 – Chapter Fourteen
I just finished number #9 of 25 treatments… I will feel better after #12 because though I realize that every week gets harder for me physically I think mentally it will be easier to know I am marching toward the finish line vs. standing at the beginning of the race. I was joking with one of my best friends the other day and saying that at the end of this I will be able to run marathons. Running marathons is something I have always admired but simply COULD NOT relate to. First of all, why suffer needlessly? Also, why suffer needlessly? And WHY SUFFER NEEDLESSLY??? I admired marathon runners, I did not want to BE one of them, but I admired them. Now I think...maybe.
I flew to Anchorage this weekend to be with my family. Teresa, babe, and nieces are doing beautifully thank the Lord. I was reading the paper and saw that there had been a fundraiser for Breast Cancer which was a five mile race through downtown Anchorage and along the Tony Knowles trail. I enjoyed reading the article and was surprised that 4,000 women participated. I don’t plan on being a poster child for anything… but I was just struck by the shear number of people affected by the disease. There were almost 300 participants who were survivors… I don’t really care for that term either to be honest. I suppose I hope to someday be one but I don’t really want to be known as a survivor of cancer. Again, part of my garbage about still not wanting to join the club which I am clearly a member of… reminds me of going to conferences where we have to play those STUPID “Getting to know your neighbor” games which NOBODY in their right mind appreciates. I always try to pretend I’m getting a drink of water or a Danish during those processes, so that I walk back into the room just as everyone is smiling from the relief of finishing the exercise and I sit down and smile back apologetically… “darn, did I miss it?” Maybe I can just hang out on the fringe of this disease and go through the process of it without officially joining. Anyway – I was impressed by the photo’s in the paper of this mass of women running for their cause. I could see who the “survivors” were in their special pink hats and as much as I would rather be known as someone’s mother, sister, daughter, and friend… I admire all of the women who have muddled through this race before me…
I was thinking about the chemo this morning. Thinking about how I was dreading the shower… Lots of trauma there. Scars to look at and decisions to make. Do I wash my hair? If I do it will come out in handfuls. If I don’t it feels gross. How many more showers before the loss requires action of some sort? So I was laying in bed dreading the shower and I was thinking about chemo and how the poison is winning though I don’t like to admit it and though I can type it, I will NEVER say it out loud. But it is. It is shocking to me how quickly a healthy body can become an unhealthy one. Doesn’t take long. It makes my past sense of security about my age and what I ate and my activity level seem kind of silly now. All of that can change, very quickly. But I was thinking about the way chemo breaks you down. Physically and mentally. There are the obvious markers like blood counts that demonstrate how quickly the poison is working. But there are other ways chemo breaks you down that your physician won’t tell you about but are perhaps worth more in terms of the quality of your days.
I don’t think of myself as smart anymore, I’m not looking for each of you to send me a note now to tell me that I really am smart. Sympathy is not the point here. I’m just noticing that my brain doesn’t work the way it used to and I hope it will again but for the moment I am not particularly smart. Nor am I attractive. I don’t feel put together and I don’t feel pretty, EVER. I have given up my need to be the “active mom” the one that remembers everything and solves the problem before it happens. I’ll give you an example: The kids needed shoes this week. I mean they NEEDED them. Trevor had to call me in Anchorage to tell me that his mother discovered that Campbell did not own one pair that still fit her. Some of the ones she was wearing were TWO sizes too small. She has thirteen pairs of shoes. NONE of them fit. The thing is, without realizing it, I was the kind of person who prided themselves on how efficiently that little “mommy” machine worked. The kids, Trevor, House, rarely NEEDED anything because I was capable of thinking about it before it became a problem. Shoes never became too small because I was always there to replace them appropriately before it became a problem. I was also the kind of mommy who tucked her kids in at night and though I’m happy to report that most nights I still do, there are some nights like last night where the kids had to come tuck me in.
Though I appreciated their little arms wrapped around my neck and their kisses, I couldn’t help but feel sad as I heard them walk back down the hall to tuck themselves in. I heard Shawn say goodnight to his sister, and I heard her ask him if he was warm enough and I thought… “that’s my line”, but for the life of me I could not lift my head off of the pillow and I closed my eyes hating that I let chemo win the latest battle.
So as I laid in bed this morning dreading my shower, I thought of all of the ways that chemo has broken me and I understand in the best way that I can that chemo is not done breaking me and that this race only gets harder. So I thought of all of that and then I thought of the ways that life is better because of it. How, I have lived most of my 33 years being afraid to try things. That fear has been a part of my existence since I was a child. I don’t know where it came from or why I live with it but I do. I’m afraid of everything and I hate it but I am and so I thought I would struggle with that forever and it would just be one of the crosses that I bare. But I was walking this weekend in Anchorage, late at night (it never gets dark there so please don’t picture a dark alley, I’m talking about broad daylight in a VERY AFFLUENT neighborhood – Mother Theresa – I am NOT.) Anyway – I was out running/walking and there were all of these neighborhoods that I have always been curious about but have never been to and I thought I should just go the way I always go because I would normally be afraid to go where I hadn’t before. But I wondered if I would pass that way again and then I thought if I want to see it, now is the time. And I realized I look at everything differently now… the fear that something bad will happen to me is gone. Maybe, because something bad did happen to me and I am surviving it. The fear that if I try something new I may fail and look less than impressive to the people around me is gone because I am failing every day and “less than impressive” is a gentle way to sum up my appearance and the way I am leading my life. But here’s what I got out of it this week. I am not afraid of life and though the chemo has broken me in lots of yucky ways, the trade off is a no-brainer. My life will in the end have been better because of my race with chemo. It beats me every single day but the race is giving me more than it is taking and for the first time I wonder if I can relate to the kind of people that run marathons.
This week I am inspired by the sound of rain on the roof, by kisses from Bella on my “loppies” (ears), by the sun just before it set behind the mountains, and by the pink hats that went before me in the race with cancer and for all of their 4,000 sisters, mothers and friends who ran along side them. I was thinking about running/walking the race in Anchorage next June. I’ll be in the pink hat, anyone want to join me? I should clarify, I’ll be in the pink hat and will be buying cocktails afterwards, any takers?
Love to all of you…j
Auntie J. and niece Bella BooJune 20, 2007 - Chapter Fifteen
I have nothing deep and philosophical to contribute at the moment. I imagine that must be a relief to some of you who are having a hard time stomaching yet ANOTHER chapter from the Cancer Patient. Though I understand from some of my more dedicated readers that once these Chapters become longer than two pages they are generally relegated to the bathroom where they can be enjoyed in small sections throughout the week. Ahhh… I wonder if EE Cummings started out as good bathroom reading… I do like the fact that my closest friends are thinking about me during their most intimate moments… I feel closer to all of you already.
The deepest thought that came to me this week was that I am an Ostrich. Yes, the bird. Are they still considered birds even though they can’t fly? They have feathers, and beaks, that should count. Anyway – I was thinking about my life and the way I navigate through it and I decided that I am an Ostrich (with really, really, short, squatty legs). I am either running/fleeing from whatever current crisis is before me and when that doesn’t work I bury my head in the dirt and wave my fluffy ass in the air until the problem passes. I am an Ostrich.
I made the observation without any other thoughts to go with it… I don’t plan on modifying any behaviors because of this little comparison, it’s just that it never dawned on me before and I thought it was worth passing along.
Ativan… I have been prescribed anti-anxiety medication for my chemo days. Seems ridiculous that I would need such a creature but apparently some of my nausea is in my head. Yes, you heard me, I am imagining it. I feel sick when I wake up on Wednesday mornings. I feel progressively sick as I drive toward town. I take as long as I possibly can to get out of my car. My stomach is churning and my hands are shaking by the time I go through the doors. All of that is apparently in my head. Somehow I felt a little less than valid when my chemo nurse (who is wonderful by the way) told me that. Yes, the medication is horrible, yes, it is going to progressively make me sicker throughout the treatments but some of it is in my head. It makes me feel like I’m being a baby or dramatic or insane or all of the above. Fine, prescribe the anti-anxiety medication, whatever. To make the situation worse though, she went on to tell me that I should also start working on visualization. That during the chemo sessions I should start imagining a green, grassy, field.
“Huh? Could you say that one more time? I’m not sure I heard that correctly. Did you say that I should imagine myself in a green, grassy, field and by doing so the reality of my current situation is somehow going to escape me?”
Don’t get me wrong, I think people who can participate in Buddhism, Hinduism or any other “ism” that promotes inner peace and the ability to meditate are simply smarter than I am. The pure fact that they can manage to transport themselves from the life’s murky moments and frenzied chaos to a green, grassy, field without the use of serious narcotics is a real feat and one that I admire. At the risk of stating the already obvious, I should note here that, I am not one of those people.
Green, grassy, fields? Seriously? As I was thinking about it I couldn’t help but notice that my meds. were brought to the ICU by the pharmacist who then signs off that he has delivered them thereby relieving himself of any further responsibility and the nurse signs that she received them which then puts her on the hook until they are dispensed INTO me. Everyone who handles them wears gloves. The vials are sealed and then double bagged in bio-hazard bags. When they are emptied the waste is not thrown in the normal red bio-hazardous bins. Instead it is thrown in a special yellow container covered with numerous stickers that read: “CAUTION - Cancer Chemotherapy Waste – Use Extreme Caution”. It reminds me of the movie, Silkwood as if the people administering it to me would be hosed down out back if it came in contact with their skin, yet they cheerfully inject it INTO my body. Did you know that when I pee I’m supposed to put the lid down and flush twice? I’m supposed to do that so unsuspecting bystanders do not get sick by the toxicity of my urine. Ouch! That little tidbit of information is going to leave a mark. It certainly doesn’t do a whole lot for ones self esteem.
Speaking of self esteem, bugs have summarily dismissed me. I was once considered irresistible to insects. I was their version of a midnight chocolate buffet. My friends chose to camp with me, not because of the witty banter, but because they knew that if there was a bug within a 100 miles of me it would find me, call it’s friends and commence with the feast. I was bug bait and my presence around a campfire ensured that no one else would be bothered. So, it was with interest that I noticed recently that bugs will fly around me, land, sniff me and fly away. It dawned on me that someone must have CC’d them on the memo about my body being a toxic waste dump because I can practically hear them shrieking: “Fly Away!, Fly Away!” I should look at that like it’s in the “win” column of the JULIE VS. CHEMO Score Card but to be honest, I’m choosing to take it personally and feel a little depressed about the fact that I have been rejected by a bug.
I thought of all of that as she was talking to me about green, grassy, fields. I think, possibly this little Ostrich has some more work to do before she’s ever going to be able to -squat in a Zen like state…. I think for now I’ll respectively decline the green, grassy, field suggestion. I think instead I will bury my head in the dirt, stick my ass in the air and go to my happy place via the mode of transportation that is both dependable and effective: ALL ABOARD THE ATIVAN EXPRESS!
Inspirations for the week? The sunshine, friends, and Lemon Drops, mommy moments with my girl, and fishing stories from my boy and treasures that hold meaning… remind me of a moment, a smile, a dance, a hug, a heart… This week I am inspired by the tiny treasures life can deliver unexpectedly that make me smile.
Love to all of you….j
The Gang at Eleanor’s Beach
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