So I am driving to Monday night yoga with Lauren which has become my new favorite class because my back feels so open and five inches taller post-practice, when I realized something. Earlier, I am at the Hope Cancer Center ready for...wait, should I say...present for my first radiation treatment. The moment I walk in it is like I am some rock star that everyone recognizes. I have my entourage of peeps in the waiting room and the receptionist knew my name. The doseologist (saying that because I think her title sounds cool; she is the one setting up the dosing) shoots me a recognizing smile as she gets water from the water cooler. The two radiology techs whisk me in smiling and teasing like I am their long lost best friend. I am thinking this is pretty cool because I don't want to be here. I am laying on the table, excuse me, couch with this mesh mask over my head strapped down so tight that my teeth are clinched. I am told to look down at my toes when I can barely open my eye lids. They set up the markings then shoot the laser on my left side and my brain starts to smell really bad. It is sort of like the smell of sanitized aluminum cookie sheets in a hot kitchen (I worked in a bakery when I was in high school.) Oh, and I get a little personal light show as they are zapping my brain. Apparently, the lights which are greenish are the lasers refracting off the water in my eyes so I am the only one that can see them. How is that for sci-fi coolness Jedi training simulation? Well, it is not. I am the only one who can smell this awful smell too. They come bopping in and out asking me these questions like the hygienist does while your mouth is gaping open. Except my jaw is clinched shut, and I can't see any think but the tops of my cheeks. "How are you doing?" Gruburronbhadjjfsdxzzz. "Are you comfortable?" Fujknsbymnntotfreakijek. Okay, for those who are not hygienists, I said: This totally sucks and is freaking uncomfortable. What the fuck do you mean I have to do this every fucking day for four weeks and it stinks in here. So I apparently compensate into a flippin' teenager when under pressure, I mean, when I am tied down like Gulliver's Travels.
Okay, okay, it isn't all that bad, and you know if anyone can do this it is me (because I am an awesome yogi time bender, that's why.) And, I just totally got off the point of my realization I came to while driving to yoga. They are totally faking it. They, the nurses, took my picture on my first visit. It sits there right at the top of my chart along with the description of me in one sentence: 36 year old mother of two ages 6 and 7 artist with metastatic breast cancer being treated for metastasis to the brain. I am so okay with that. I like them knowing exactly who I am in two seconds and treating me like their long lost best friend. Sometimes we all deserve a little rock star status.
Besides, faking it until I make it is my number one coping mechanism. In college, I did the stupid thing any 18 year old does who didn't drink alcohol in high school (okay, mom, I had a few sips here and there but hated how it made me feel and stopped after a few sips.) So I got really mad at a boy at one party and started downing the Jungle Juice. I preceded to get totally wasted. Yep, my "designated mom," one girl in my circle of friends was not allowed to drink for the weekend on a rotating schedule so there was always a girl watching out for you, held my hair, cleaned me up, and told me that the red vomit was not me bleeding from the inside. Well, I pretty much learned my lesson. Man, I rock, one time and lesson learned...awesome. From that point on, I fake drank. I ordered one rum and Coke, Roman Coke, to begin the night. Then I preceded to order plain sodas all night. I am out on the dance floor for three or more hours solid on my caffeine while all the drunks were slumping in the corner. I say that was a pretty good way to spend the evening faking and still fitting in with the crowd.
Oh, there are plenty over other stories of my faking it until I make it. Like the time I delivered a speech to 500 plus of my peers at the Colorado Art Education Association annual conference in 2002, for Rookie Teacher of the Year. I had lost my second baby to a miscarriage at ten weeks only seven days prior to the event. I was still cramping. I was still grieving hard core. But, I did it. I walked up to the podium, started bawling my eyes out, took a deep breath, and totally blamed all my flood emotions on the pure fact that my teaching professor, Patrick Fahey, just hugged me and whispered in my ear, "I am so proud of you." Okay, I probably would have cried anyway being so nervous in the spot light. But, heck, it is good to fake it a little when you have to. And, if I really reflect on my first five years of teaching, it was the faking it until I made that won me that moment of honor in the spot light.
Or let us go back to my sister's wedding. There she was all dried eyed and tall while the two other brides maids and myself welled up on our reddened, damped cheeked glory. She teased us all for our tears so we collectively faked blame on the tiger lilies and allergies. Well, everyone knew the truth but heck, it sure got a good laugh out of the deal.
Yes, there are a lot of stories. In fact, I actually think I taught my kids to fake it until they make it though I am not sure that was a really good idea. "Sure, honey, just smile and stand up. The pain will go away in that toe you just totally jammed into the cement step." But, all in all I smile and laugh all the way through whatever I need to make it through. No, It isn't always appropriate and acting like a snotty teenager in the office of my radiology oncologist is probably not the best of coping mechanisms. However, it is pretty funny in retrospect. And heck, they had no idea what I was saying anyway in my Hamible Lecter mask. One thing is for true, faking it works. In essence it is the power of attraction. I seek to attract the best outcome. So please understand when I am telling you it is fine, shrugging my shoulders, blowing it all off like it is a trip to the candy store, and pretty much marginalizing my emotions, I am coping. My mom calls it grace.
Deep down, know I appreciate you more then you think. Also know I have a safety net. She signed up for the job thirty six years, six months and two days ago. And man, where would any teenager be with out one of her? For reals. Whatever. Like I am totally needing to go to bed now. Love you mom.
Monday, October 24, 2011
Sunday, October 23, 2011
Lists
So I have been a little...well...emotional. I suppose that is acceptable when you are one who is walking down the street pretty much looking and acting like everyone else. Well, yep, except you pretty much feel like you can go to sleep any minute because there is this stupid thing in your body that doesn't seem to want to go a way called cancer. In the end, I don't spend much time thinking about it right now as I can't. I have better things to do like clean out the basement, throw out old files, organize photo albums, shop for Christmas presents, plan Halloween parties for both kids, schedule to volunteer at school, run twice a week and practice yoga three times a week or the other way around, read a book for book club (Hunger Games this month,) balance my budget, find some shoes that actually fit my son's growing yet petite feet, wash sheets, make beds, fold laundry, dust, clean, blah blah blah. Oh, did I say give the kids hair cuts and host ol' friends for a hot dog roast over the fire pit after going to the pumpkin ranch. Yes, my lists are huge.
Yet, I squeeze in a night out with some pretty funny women who made me laugh so hard I nearly peed my pants about the "list." This is the list of things that you would want your most trusted friend to go in your house and destroy all evidence of if you were to, you know, die. Man, it was hilarious what these gals were coming up with. It was my turn. I had nothing except one old photograph of an inappropriate kiss that may or may not be mine and may or may not actually exist and the memory would die with my and the party member that I may or may not actually be able to mention here. It was my turn, and I couldn't think of anything I had that was some weird dark secret or something I would be embarrassed of my mother washing in the laundry.
All the while I am listening and laughing I am thinking about the pure fact that I have been preparing to die. It may not really make sense to anyone but my 85 year old grandparents when I am giving this or that away. I have tossed out teaching files. It was harder then I thought. I thought I would go down there in the darkest corner of the basement, find my highly organized bins, open them over the dumpster, and away that part of my life would fall into a landfill. Of course, I would save the texts and other useful items for all my art teaching friends if they wanted them. But, it wasn't that easy. I sat there on the cold, dusty cement floor and was consumed in myself. I will get there and am almost there. Doing this weeding out the dust of my life is hard and releasing all at the same time. Besides, as both of my good friends I have been e-mailing and asking advise and encouragement from this past week on the disposal of said teaching materials, the stuff is out dated already anyway. Slide projectors, transparencies, and posters are all on the way out.
Really, whether you aren't sure you will make your 40th birthday or not, you should try to weed your garden. Why do you have all that stuff? What will "they" do with it when you are gone? Oh, I am not sure. For my kids, I weeded out the old stuff of mine into three small bins, mostly photo albums. I tossed the VHS tapes, the cassette tapes, the weird figurine that has no sentimental value to anyone but me so if I am not here to tell the story than it has no value at all, and the entire file of receipts and Excell spreadsheet for my wedding that I tucked into my wedding album...it cost a total of $768.97 plus the dress for $340 something. That reminds me that I still have that dress in a box at the top of my son's closet. Oh, and I guess it has been nearly twelve years and that great strip of fabric you all signed that was supposed to be appliqued on the back of the quilt my mother made is never really getting on that quilt.
It is true, I could be a miracle and live fifteen more years. Yes, they are hopeful this full brain radiation will buy my a good year. And yes, I am getting my life out of their life...just a little. I don't really ask anyone to understand. I don't ask anyone to understand how releasing it is to do this. Cathartic. In fact, I would encourage everyone to do it. Just do it. What is that list you would want your I.C.E. (In Case of Emergency) friend to go get from your house should you die before them? Are the items secret and embarrassing? Or is it something wonderful you want them to have because it allows you to make them smile even when you aren't there. The item at the top of my list, the only item I really have on my list is my box of journals. Yes, there is probably some really embarrassing stuff in them. But, I gift those to my daughter. I told her that they were hers last night. I told her she could read them someday. Maybe she could even write them into a book. "Oh, no mommy, I can't, they are private." Yes, my dear, that is why I give them to you and only you. They are who I am and the only true part of me that I leave behind to make you cry, make you laugh, and make you know that you really are my true soul mate. I love you to the moon and back.
PS: You better share them with your brother because I love him a heck of a lot too.
Yet, I squeeze in a night out with some pretty funny women who made me laugh so hard I nearly peed my pants about the "list." This is the list of things that you would want your most trusted friend to go in your house and destroy all evidence of if you were to, you know, die. Man, it was hilarious what these gals were coming up with. It was my turn. I had nothing except one old photograph of an inappropriate kiss that may or may not be mine and may or may not actually exist and the memory would die with my and the party member that I may or may not actually be able to mention here. It was my turn, and I couldn't think of anything I had that was some weird dark secret or something I would be embarrassed of my mother washing in the laundry.
All the while I am listening and laughing I am thinking about the pure fact that I have been preparing to die. It may not really make sense to anyone but my 85 year old grandparents when I am giving this or that away. I have tossed out teaching files. It was harder then I thought. I thought I would go down there in the darkest corner of the basement, find my highly organized bins, open them over the dumpster, and away that part of my life would fall into a landfill. Of course, I would save the texts and other useful items for all my art teaching friends if they wanted them. But, it wasn't that easy. I sat there on the cold, dusty cement floor and was consumed in myself. I will get there and am almost there. Doing this weeding out the dust of my life is hard and releasing all at the same time. Besides, as both of my good friends I have been e-mailing and asking advise and encouragement from this past week on the disposal of said teaching materials, the stuff is out dated already anyway. Slide projectors, transparencies, and posters are all on the way out.
Really, whether you aren't sure you will make your 40th birthday or not, you should try to weed your garden. Why do you have all that stuff? What will "they" do with it when you are gone? Oh, I am not sure. For my kids, I weeded out the old stuff of mine into three small bins, mostly photo albums. I tossed the VHS tapes, the cassette tapes, the weird figurine that has no sentimental value to anyone but me so if I am not here to tell the story than it has no value at all, and the entire file of receipts and Excell spreadsheet for my wedding that I tucked into my wedding album...it cost a total of $768.97 plus the dress for $340 something. That reminds me that I still have that dress in a box at the top of my son's closet. Oh, and I guess it has been nearly twelve years and that great strip of fabric you all signed that was supposed to be appliqued on the back of the quilt my mother made is never really getting on that quilt.
It is true, I could be a miracle and live fifteen more years. Yes, they are hopeful this full brain radiation will buy my a good year. And yes, I am getting my life out of their life...just a little. I don't really ask anyone to understand. I don't ask anyone to understand how releasing it is to do this. Cathartic. In fact, I would encourage everyone to do it. Just do it. What is that list you would want your I.C.E. (In Case of Emergency) friend to go get from your house should you die before them? Are the items secret and embarrassing? Or is it something wonderful you want them to have because it allows you to make them smile even when you aren't there. The item at the top of my list, the only item I really have on my list is my box of journals. Yes, there is probably some really embarrassing stuff in them. But, I gift those to my daughter. I told her that they were hers last night. I told her she could read them someday. Maybe she could even write them into a book. "Oh, no mommy, I can't, they are private." Yes, my dear, that is why I give them to you and only you. They are who I am and the only true part of me that I leave behind to make you cry, make you laugh, and make you know that you really are my true soul mate. I love you to the moon and back.
PS: You better share them with your brother because I love him a heck of a lot too.
Tuesday, October 18, 2011
Here We Go
This really is a strange world I tripped into. I flutter in and out of medical buildings just being who I am, all shiny. Because, because I have to. It really can feel like one foot is in West Berlin and one foot is in East Berlin circa 1980. One minute I am hearing about how well I will fair. And, the next I am signing a release recognizing that there is some giant word starting with neuro- that could happen to my brain tissue with permanent, big world recourse in the areas that have already been radiated with the stereotactic radiation of cyber knife. Signing on the dotted line that I am okay with...did that mean I could be a vegetable? But it is rare, extremely rare. But, I am signing this.
In the end as I pulling together all the pieces and asking if I can basically still live my awesome life as a 36 year old mother of two, I am hearing them say, sort of. And, it may not be so bad. After all, I am a 3.89 GPA student who could have easily been a 4.0 in both high school and college if I wasn't too busy in the art room to care about the chemistry lab. And, there you have it, take 30 years off my brain life, send me some word puzzles, keep my active and relaxed all at the same time, and buy me a good year (and we will pray for way more.)
From what I understand and can summarize is that full brain radiation is the necessary treatment. Though we could cyber knife the spots, we don't want to make Swiss cheese out of my grey matter. And, the assumption is I have other sleeper cells wanting to turn my brain into the Death Star. If we go back to the fact that I have the human epidermal receptor (HER2/neu) over expression cancer and the Herceptin is doing a stellar job turning off these genes in my body. But, it doesn't go into my brain. So the hope here is that the radiation will wipe my slate clean. It will rid my brain of all sleeper cells wanting to turn into tumors. Then the hope is the Tykerb (or other new awesome drug) will block out new cells from coming into my navigation room in my head.
The plan is I will have 20 treatments that will build in intensity over the four weeks. These treatments will start next Monday. Each session should be about 15 minutes with no immediate effects. Acute effects should build slowly and hit around the fourth week (Thanksgiving...good thing we already have reservations at the Greenbriar for dinner). The main effect being fatigue and headaches. I will be on a steroid to prevent swelling. Swelling of my brain, that is. It is a little unsettling to be warned that if I wake up with a headache or my headache which is supposed to just be a mild one like I currently have, gets worse, I am to call 911 and hop on the fastest ambulance. (Hint, hint, this is what you all can really help me watch for as this sort of freaks me out.) These effects should continue to increase in a couple weeks post-treatment. By December, these effects should decrease slowly.
Latten and permanent effects should begin to become apparent about that time. So there is a lot of guessing and "we don't really know" about what these might be as apparently, my case is pretty rare. It is to be assumed that some of the effects I had with cyber knife such as stuttering, forgetting simple written vocabulary words while reading out loud and general confusion will be some what permanent. I have already lost my superheromommy abilities to multitask and pretty much wrote off teaching large, loud classrooms as a profession, so I guess it will be about compensating and living as loud as I possibly can. I mean, after all, I am pretty freakin' loud so I have a lot of room to fall before I squeak like a mouse.
All and all, Dr. Klish, my newest shipmate, is pretty hopeful of my outcomes. She is glad I am young, busy, determined, active, and thinks my tumors are the type that will react well to this treatment. Yes, we mean...die suckers, die. I sort of laugh at myself in retrospect as the entire appointment, though I took in the magnitude of being slightly less smart in four weeks time, I just kept asking...but can I still try to live my super-mommy life just as I have mapped it out? And the answer is yes. Yes, but please take a nap everyday, run shorter distances or walk, and just listen to my inner language (wait, but it is saying to not stop...ever...shhhh....) Push this body of mine. But, cut it some slack and let it to heal too. I guess it is a good thing that the weather is changed as the wind is cold and sky cloudy. So, as my Monday night yogi, who said she would turn down the heat a bit if I want to try to attend, meditated on this past two weeks, it is fall. It is time to slow it down, open up the heart yet hunker down for the fall in intimate twists and restorative poses.
It is a really odd world I stepped into totally by accident. Yes, I finished Eckhart Tolle's, A New Earth, just days before I felt my left breast would simply implode into my chest in 2009. I understood being in the moment. Maybe God thought I wasn't really getting the message and had to shove me into this life where I can't tell you how many birthdays I will celebrate. I CAN tell you the celebration will be big. No, simply, my life research into authors like Tolle and the guy who wrote the Celestine Prophecy, and starts with an R, was all just the thumping in the ground from God. My reading was training. A gift. Thank you God. Really, I am on the tight rope of feeling insane. I can't see past tomorrow anymore. But, you all are there as my seekers, my net. Bless you and lift your heart as you lift mine. And that, my friends, that is what my last painting is about. Do you see yourself in there? Well you should. Oh crud, I went and got all gooshy again. Goodnight.
In the end as I pulling together all the pieces and asking if I can basically still live my awesome life as a 36 year old mother of two, I am hearing them say, sort of. And, it may not be so bad. After all, I am a 3.89 GPA student who could have easily been a 4.0 in both high school and college if I wasn't too busy in the art room to care about the chemistry lab. And, there you have it, take 30 years off my brain life, send me some word puzzles, keep my active and relaxed all at the same time, and buy me a good year (and we will pray for way more.)
From what I understand and can summarize is that full brain radiation is the necessary treatment. Though we could cyber knife the spots, we don't want to make Swiss cheese out of my grey matter. And, the assumption is I have other sleeper cells wanting to turn my brain into the Death Star. If we go back to the fact that I have the human epidermal receptor (HER2/neu) over expression cancer and the Herceptin is doing a stellar job turning off these genes in my body. But, it doesn't go into my brain. So the hope here is that the radiation will wipe my slate clean. It will rid my brain of all sleeper cells wanting to turn into tumors. Then the hope is the Tykerb (or other new awesome drug) will block out new cells from coming into my navigation room in my head.
The plan is I will have 20 treatments that will build in intensity over the four weeks. These treatments will start next Monday. Each session should be about 15 minutes with no immediate effects. Acute effects should build slowly and hit around the fourth week (Thanksgiving...good thing we already have reservations at the Greenbriar for dinner). The main effect being fatigue and headaches. I will be on a steroid to prevent swelling. Swelling of my brain, that is. It is a little unsettling to be warned that if I wake up with a headache or my headache which is supposed to just be a mild one like I currently have, gets worse, I am to call 911 and hop on the fastest ambulance. (Hint, hint, this is what you all can really help me watch for as this sort of freaks me out.) These effects should continue to increase in a couple weeks post-treatment. By December, these effects should decrease slowly.
Latten and permanent effects should begin to become apparent about that time. So there is a lot of guessing and "we don't really know" about what these might be as apparently, my case is pretty rare. It is to be assumed that some of the effects I had with cyber knife such as stuttering, forgetting simple written vocabulary words while reading out loud and general confusion will be some what permanent. I have already lost my superheromommy abilities to multitask and pretty much wrote off teaching large, loud classrooms as a profession, so I guess it will be about compensating and living as loud as I possibly can. I mean, after all, I am pretty freakin' loud so I have a lot of room to fall before I squeak like a mouse.
All and all, Dr. Klish, my newest shipmate, is pretty hopeful of my outcomes. She is glad I am young, busy, determined, active, and thinks my tumors are the type that will react well to this treatment. Yes, we mean...die suckers, die. I sort of laugh at myself in retrospect as the entire appointment, though I took in the magnitude of being slightly less smart in four weeks time, I just kept asking...but can I still try to live my super-mommy life just as I have mapped it out? And the answer is yes. Yes, but please take a nap everyday, run shorter distances or walk, and just listen to my inner language (wait, but it is saying to not stop...ever...shhhh....) Push this body of mine. But, cut it some slack and let it to heal too. I guess it is a good thing that the weather is changed as the wind is cold and sky cloudy. So, as my Monday night yogi, who said she would turn down the heat a bit if I want to try to attend, meditated on this past two weeks, it is fall. It is time to slow it down, open up the heart yet hunker down for the fall in intimate twists and restorative poses.
It is a really odd world I stepped into totally by accident. Yes, I finished Eckhart Tolle's, A New Earth, just days before I felt my left breast would simply implode into my chest in 2009. I understood being in the moment. Maybe God thought I wasn't really getting the message and had to shove me into this life where I can't tell you how many birthdays I will celebrate. I CAN tell you the celebration will be big. No, simply, my life research into authors like Tolle and the guy who wrote the Celestine Prophecy, and starts with an R, was all just the thumping in the ground from God. My reading was training. A gift. Thank you God. Really, I am on the tight rope of feeling insane. I can't see past tomorrow anymore. But, you all are there as my seekers, my net. Bless you and lift your heart as you lift mine. And that, my friends, that is what my last painting is about. Do you see yourself in there? Well you should. Oh crud, I went and got all gooshy again. Goodnight.
Monday, October 17, 2011
Black Dress
I passed by one of my consignment stores on the way to yoga class. It the window is a dress. It is black. The bodice is two sections of material gathered just so and anchored by a beaded emperor waist. I put myself in that dress, that dress in the window. For a split second, I put my old self in that dress. I looked good. I had some place to go. I had breasts that filled the bodice yet were firm enough not to bounce their way out of the deep neck line of the halter. I had no six inch wide scars nor a rash of raised red dots.
And, that was the moment I knew I had travelled this far. I look at my next step into full brain radiation and am just...just...just. I hear the tone in the voices around me; I see it in your eyes. In fact I freaked out about it last week. Well, rightly so. Who wouldn't freak to think of their brain on fire everyday for four weeks. Then I remember nearly three years ago. I remember going through the six weeks of planning of teaming up, of fear and then a knowing that there was another side. I got through that other side. We thought it was over...just it for a really long time...one shit of a year that maybe made everyone in my life a bit stronger...a bit more understanding of the little things.
And now, I know better. I now understand what treatment is. Treatment is a gift of a few more months. I found a calm in that. Okay so I went a little crazy in my head...but the seas of settled with a knowing. I suppose a lot of this has to do with my friends. They are amazing people. Gina, sat next to me in church. She cried too. M-N made me laugh and handed me a dollar before I even knew I was short by exactly a dollar. She made yet another doctor's appointment into a girl's afternoon of chitchat and knitting when I was just about to explode from the "I'm so sorry" looks. Janice and Laura came to see me. They just drove. Laura drove hours. She brought the cousins and filled Grandma's house with memories of being young with my own cousins giggling over flashlight tag and staying up way too late. Sabine just listened. I worked it out. I worked out a lot of how I felt. My folks, well, we all know how lucky I am to have them and to honor them would take a full hour of notes. And then, there is Scott who started the laundry and put the kids to bed.
Yes, I finally found my calm in so many in little things like Kim calling me to remind me the permission slip was due as I honestly and simply forgot. I find calm in the big things like all the people I know I have touched with my paintings in the current show at the Muse Gallery. I went a little crazy and I might have even tried pushing you all away in the hopes that this would stop being some big deal. I asked you to just be subtle, intuitive, on your own as I could no longer fill your needs and be your band aid no matter how much I desire. So that is just what you are doing.
I felt very sad three steps beyond that shop window with the black dress. I couldn't wear that anymore. I am not sure I would even have a chance to wear something like that. I wonder that, you know, each time I do something, I wonder if that was it. Is that the last time I.... That is not going away. But, there is a calm. Finally, I figured out how to pray. It took me a few years, and I thought there was a rule book. I was wrong. I can do my yoga and find a calm in my tired body at the end. There, I am still. I lift up everyone. Every one of you. I ask the burden as my friend is lifted. Let me carry that burden while you figure out how to be really sneaky and carry one of mine. And after it all. When I was the last one laying there on that floor in the yoga studio that was filled all day with a community being at peace in their bodies, I saw it. I saw myself holding my grandchild. That, my dear, is the calm. It's a boy.
PS This is unedited as I need to go to bed and read for book club in two nights. Yes, I waited until the last minute. See life really isn't all that different from yours. You just have better cleavage then me and probably don't wait until the last week to finish your book.
And, that was the moment I knew I had travelled this far. I look at my next step into full brain radiation and am just...just...just. I hear the tone in the voices around me; I see it in your eyes. In fact I freaked out about it last week. Well, rightly so. Who wouldn't freak to think of their brain on fire everyday for four weeks. Then I remember nearly three years ago. I remember going through the six weeks of planning of teaming up, of fear and then a knowing that there was another side. I got through that other side. We thought it was over...just it for a really long time...one shit of a year that maybe made everyone in my life a bit stronger...a bit more understanding of the little things.
And now, I know better. I now understand what treatment is. Treatment is a gift of a few more months. I found a calm in that. Okay so I went a little crazy in my head...but the seas of settled with a knowing. I suppose a lot of this has to do with my friends. They are amazing people. Gina, sat next to me in church. She cried too. M-N made me laugh and handed me a dollar before I even knew I was short by exactly a dollar. She made yet another doctor's appointment into a girl's afternoon of chitchat and knitting when I was just about to explode from the "I'm so sorry" looks. Janice and Laura came to see me. They just drove. Laura drove hours. She brought the cousins and filled Grandma's house with memories of being young with my own cousins giggling over flashlight tag and staying up way too late. Sabine just listened. I worked it out. I worked out a lot of how I felt. My folks, well, we all know how lucky I am to have them and to honor them would take a full hour of notes. And then, there is Scott who started the laundry and put the kids to bed.
Yes, I finally found my calm in so many in little things like Kim calling me to remind me the permission slip was due as I honestly and simply forgot. I find calm in the big things like all the people I know I have touched with my paintings in the current show at the Muse Gallery. I went a little crazy and I might have even tried pushing you all away in the hopes that this would stop being some big deal. I asked you to just be subtle, intuitive, on your own as I could no longer fill your needs and be your band aid no matter how much I desire. So that is just what you are doing.
I felt very sad three steps beyond that shop window with the black dress. I couldn't wear that anymore. I am not sure I would even have a chance to wear something like that. I wonder that, you know, each time I do something, I wonder if that was it. Is that the last time I.... That is not going away. But, there is a calm. Finally, I figured out how to pray. It took me a few years, and I thought there was a rule book. I was wrong. I can do my yoga and find a calm in my tired body at the end. There, I am still. I lift up everyone. Every one of you. I ask the burden as my friend is lifted. Let me carry that burden while you figure out how to be really sneaky and carry one of mine. And after it all. When I was the last one laying there on that floor in the yoga studio that was filled all day with a community being at peace in their bodies, I saw it. I saw myself holding my grandchild. That, my dear, is the calm. It's a boy.
PS This is unedited as I need to go to bed and read for book club in two nights. Yes, I waited until the last minute. See life really isn't all that different from yours. You just have better cleavage then me and probably don't wait until the last week to finish your book.
Saturday, October 15, 2011
And this is the day...
...that I praise that I have friends and family that rock! Love you. All of you. You make me smile. I am so proud of you. Thank you for being part of my life.
Friday, October 14, 2011
Walking around with Prose
When I am walking around, I am walking around with prose continually in play in my head. It is a bit like a tape recorder. Or, maybe more of a broken record player on some days. When I was little, I thought everyone had these tapes playing in their mind. I learned to write and sometimes wrote down what I heard. When I was a teenager, I thought I had gone schizophrenic and prayed the voices would stop. By the time I graduated, I made friends with my prose and began to write. But most, since I was so busy and the best words came when I was on a bike riding towards campus to Zoology 101, I wished I could press play and record my thoughts. My prose got lost.
Fifteen years later and with minimum amount of training in creative writing, I have learned to maintain my prose, edit, rewrite, and then type it up here on this handy computer. Sometimes I am remiss at words lost in the time passing from the spark of an idea in the grocery store to the quiet hours of my home when everyone is sleeping and the washed dinner dishes are melodically dripping in the kitchen sink. But, mostly, the prose thrive and grow in the hours between their birth and the page.
My prose are filled with deep crevasses today. My day started off with a conversation with my seven year old daughter about the woman's period and its role in the life cycle. This moved into the the conversation of reincarnation and the difference between Hindu and Christian views on the subject. By the time we sat at our oatmeal, my daughter proclaimed that she was my Great Grandmother Ruth who chose her body for her soul at birth so that she could be near her granddaughter, my mother. And, she shared that my sister's dog, Beau who passed away last year, comes to visit her in her dreams most nights.
The prose filled my day as I sat in my oncologist office chit chatting with my mom on the above subject of my daughter's apparent spirit guides. And, we smiled at the fact that the room was filled with my own spirits and my mom knew it as clearly as I did. Dr. Mark is a sensitive soul and one for reflection which is why I chose him to captain my ship. Yet, when I gave the short version of my deep conversations with my seven year old and asked if he had those conversations with his seven year old, he coily smiled and said, "No, we mostly talk about Star Wars Legos. Now, take a big deep breath in and out. Again..."
At one point during the appointment, I breathed in my courage and asked if my new path on the this crap cancer journey with the full brain radiation was surprising or was predictable. Of course this is a tender spot, but I push for honesty. So after some fancy foot work, it was put out on the table that it is not surprising at all. We just didn't plan for it as we are all optimists. Did I tell you that back in April 2009, we didn't know I was HER2/neu+ and could have the Herceptin treatments? I was pretty much told to get my affairs in order. This is code word for you have six months, say your good byes. So in all estimation, I have out lived my expiration date by nearly 2 years. Another estimation my prose put together during my two hour relaxation in the recliner getting my Herceptin slowly through my power port, was that my body is on a 10-11 month time cycle. My four pregnancies were timed 10-11 months between each conception (well seven between my first born and concetion of my second born...but I was planning on ten). And, each bad episode is vaguely ten months. So yes, this full brain radiation is a one shot deal, but it buys me ten to twelve months. So if you do the math, I can loose any weight I gain, get out running, and be feeling pretty good again by next summer. I realize that the fall of next year may bring another episode requiring boxes of Kleenex. Yet, I will let my prose write in my head that I am a miracle, one for the record books, the one that beat all odds, kicked cancer in the butt, and bought herself five (because I am going to be forty!), ten, twenty pretty good years of feeling pretty good.
Yes, I can not describe to you how it feels to think of your life in months when once I wrote a short story of an old woman in a rocking chair that creaked and imagined that was me, age 82. I am okay with it at the same time I am not okay with it. I talked a long time with a friend this evening. Yes, I talked and bawled, and she listened and hugged. I told her that I came to a new place today. I had always said I didn't want to die all wasted away looking and bald in a bed. Today, I realized I did want to be all wasted away when I died. For if I die when I am as vital and super-hot-momma as I am now, then that means that my death is sudden and surprising. It means that I wasn't able to fight all the way as far as I could until this body I live in simply gave out. You hear that, cancer, I am putting up my fists, and I know KungFu.
I cry to think I will loose my hair again pretty soon. I am sad to proclaim on Christmas morning, "no pictures please." But, I know that this is not the bald when I will die. Maybe Grandpa Homer told me that. He was here today. (I love you, but you know that.) I had a good day today. My spirits helped. I know that. It is hardest when I think about my kids. It is selfish that I want to be with them forever. Maybe their souls chose their bodies and chose me as a mother so that they could learn to be strong and vital in spite of not having their mother. Maybe my daughter is right. Maybe she is Ruth's soul. I would love that. Ruth lived it. She was a single mom of three girls during the Depression when my grandmother's father died when she was five. Ruth worked, raised her girls and outlived two other husbands (I think.) I remember her living in the senior living apartments and leaning to quilt, play piano, and played Bridge. Well in her 80s, she was the life of the party then. I can see that in Julia.
It will all be okay. It isn't how we expected it to be. And, maybe I am the one in your life that is dealing with this because I can. I am freakin' ass strong (excuse my language) and Taurus Bull Head She Devil none the less (Okay, I have to pump up my ego just a little bit to stay as bad ass strong as I am.) So I am here for a short spell to tell you in all my prose, once I get them out on my head on the paper, to slow it down. Stop to smell the roses. Or, take a picture of them. If you are mad at something or yourself, ask, what is the real world impact if this doesn't come out the way I wanted it to? Find the beauty in yourself. Stop to look at the people around you, especially your children. Don't paint a cloud black when you can line it with silver. And, for heaven's sake, take out the trash if it is starting to stink. (Make sure to recycle, eat free-range, use cloth shopping bags, and buy locally.)
The following is a poem I have the cycles through my head on a broken record and has since I was very little, maybe eight years old. It has changed through the years, it has changed through the life happenings, and maybe it will change tomorrow.
Don't just look, see.
Don't just hear, listen.
Don't just eat, taste.
Don't just breath, smell.
Don't just touch, feel.
Don't just think, know.
Don't just live, be alive.
Fifteen years later and with minimum amount of training in creative writing, I have learned to maintain my prose, edit, rewrite, and then type it up here on this handy computer. Sometimes I am remiss at words lost in the time passing from the spark of an idea in the grocery store to the quiet hours of my home when everyone is sleeping and the washed dinner dishes are melodically dripping in the kitchen sink. But, mostly, the prose thrive and grow in the hours between their birth and the page.
My prose are filled with deep crevasses today. My day started off with a conversation with my seven year old daughter about the woman's period and its role in the life cycle. This moved into the the conversation of reincarnation and the difference between Hindu and Christian views on the subject. By the time we sat at our oatmeal, my daughter proclaimed that she was my Great Grandmother Ruth who chose her body for her soul at birth so that she could be near her granddaughter, my mother. And, she shared that my sister's dog, Beau who passed away last year, comes to visit her in her dreams most nights.
The prose filled my day as I sat in my oncologist office chit chatting with my mom on the above subject of my daughter's apparent spirit guides. And, we smiled at the fact that the room was filled with my own spirits and my mom knew it as clearly as I did. Dr. Mark is a sensitive soul and one for reflection which is why I chose him to captain my ship. Yet, when I gave the short version of my deep conversations with my seven year old and asked if he had those conversations with his seven year old, he coily smiled and said, "No, we mostly talk about Star Wars Legos. Now, take a big deep breath in and out. Again..."
At one point during the appointment, I breathed in my courage and asked if my new path on the this crap cancer journey with the full brain radiation was surprising or was predictable. Of course this is a tender spot, but I push for honesty. So after some fancy foot work, it was put out on the table that it is not surprising at all. We just didn't plan for it as we are all optimists. Did I tell you that back in April 2009, we didn't know I was HER2/neu+ and could have the Herceptin treatments? I was pretty much told to get my affairs in order. This is code word for you have six months, say your good byes. So in all estimation, I have out lived my expiration date by nearly 2 years. Another estimation my prose put together during my two hour relaxation in the recliner getting my Herceptin slowly through my power port, was that my body is on a 10-11 month time cycle. My four pregnancies were timed 10-11 months between each conception (well seven between my first born and concetion of my second born...but I was planning on ten). And, each bad episode is vaguely ten months. So yes, this full brain radiation is a one shot deal, but it buys me ten to twelve months. So if you do the math, I can loose any weight I gain, get out running, and be feeling pretty good again by next summer. I realize that the fall of next year may bring another episode requiring boxes of Kleenex. Yet, I will let my prose write in my head that I am a miracle, one for the record books, the one that beat all odds, kicked cancer in the butt, and bought herself five (because I am going to be forty!), ten, twenty pretty good years of feeling pretty good.
Yes, I can not describe to you how it feels to think of your life in months when once I wrote a short story of an old woman in a rocking chair that creaked and imagined that was me, age 82. I am okay with it at the same time I am not okay with it. I talked a long time with a friend this evening. Yes, I talked and bawled, and she listened and hugged. I told her that I came to a new place today. I had always said I didn't want to die all wasted away looking and bald in a bed. Today, I realized I did want to be all wasted away when I died. For if I die when I am as vital and super-hot-momma as I am now, then that means that my death is sudden and surprising. It means that I wasn't able to fight all the way as far as I could until this body I live in simply gave out. You hear that, cancer, I am putting up my fists, and I know KungFu.
I cry to think I will loose my hair again pretty soon. I am sad to proclaim on Christmas morning, "no pictures please." But, I know that this is not the bald when I will die. Maybe Grandpa Homer told me that. He was here today. (I love you, but you know that.) I had a good day today. My spirits helped. I know that. It is hardest when I think about my kids. It is selfish that I want to be with them forever. Maybe their souls chose their bodies and chose me as a mother so that they could learn to be strong and vital in spite of not having their mother. Maybe my daughter is right. Maybe she is Ruth's soul. I would love that. Ruth lived it. She was a single mom of three girls during the Depression when my grandmother's father died when she was five. Ruth worked, raised her girls and outlived two other husbands (I think.) I remember her living in the senior living apartments and leaning to quilt, play piano, and played Bridge. Well in her 80s, she was the life of the party then. I can see that in Julia.
It will all be okay. It isn't how we expected it to be. And, maybe I am the one in your life that is dealing with this because I can. I am freakin' ass strong (excuse my language) and Taurus Bull Head She Devil none the less (Okay, I have to pump up my ego just a little bit to stay as bad ass strong as I am.) So I am here for a short spell to tell you in all my prose, once I get them out on my head on the paper, to slow it down. Stop to smell the roses. Or, take a picture of them. If you are mad at something or yourself, ask, what is the real world impact if this doesn't come out the way I wanted it to? Find the beauty in yourself. Stop to look at the people around you, especially your children. Don't paint a cloud black when you can line it with silver. And, for heaven's sake, take out the trash if it is starting to stink. (Make sure to recycle, eat free-range, use cloth shopping bags, and buy locally.)
The following is a poem I have the cycles through my head on a broken record and has since I was very little, maybe eight years old. It has changed through the years, it has changed through the life happenings, and maybe it will change tomorrow.
Don't just look, see.
Don't just hear, listen.
Don't just eat, taste.
Don't just breath, smell.
Don't just touch, feel.
Don't just think, know.
Don't just live, be alive.
Wednesday, October 12, 2011
Waiting for Supermom
When I started this blog, I intended to share funny stories about how my dinner was on fire and how I went on a late night hunt for the perfect sneakers for my son. Well, both those stories are quite true. My linguine frumped limp more quickly then I expected and landed their tresses in the flames of the gas cook top. With quick thinking and a flick of the kitchen towel after turning off the burner, the situation was under control with no damage. The meal of mushroom linguine was quite divine in spite of a few black singed tips cleverly masked in parmesan.
And the shoes, well, I had a hard time deciding if it was my immense love for my son or sure will for self preservation to send me running out at 8:30 pm to three stores, closing the last at 10 pm, and scoring a lace up sneaker that may bridge the old-too-tights and the new-but-can't-return-them-because-he-wore-them-out-of-the-store-but-they-are-way-too-big shoes. Well, this also ended divinely by mediating the usual morning drama of poorly fitting shoes and socks. Did I say he got new socks too? The claim of my darling when asked how his shoes worked out at school today was, "They worked great and made me run really fast when I was chasing the girls." Oh, boy. I heard later at conferences that he may have gotten a tinsee bit of trouble for the chasing.
So I have learned this week that all a boy needs to give him superpowers is well fitting silver sneakers. The fairy of the house is a bit more complicated. Well, isn't the common social stigma of the fairer gender one of complexity and headaches? My little female is quite simple really. She doesn't need a knight riding in on a white horse. No, she needs her mommy's cuddles. When she is feeling stressed, she needs her blankets. She sneaks quietly in my bed about 5 in the morning when it is dark and falls quickly back asleep. I look at her little face as the sun rises and see the newborn baby I held nearly seven and half years ago. She was a preemie. I had to wrap her up super tight in a swaddling blanket for five weeks or she would wail with much discontent. But, if she was rolled in her blanket with her little knit cap that fit on the end of my fist so that all you could see was her face, she slept contently. We called her Burrito Baby. I will have to tell her future husband to be sure to have afghans all around the house. If she is upset, all he has to do is wrap her up and hold her until the tide waters recede.
It is apparent to me as a parent that my children are amazing beings. They are stressed and anxious lately as they must know that Mommy is worried. Yet, somewhere between the sibling rivalry and the drama, they find their inner strength to teach me a few things. "Start with the end in mind, Momma. That is what we are supposed to do at school." They are learning the seven healthy habits and this is habit two, I think. So Monday, I moved my yoga time to the evening after they have gone to bed so I could spend my time volunteering at school, connecting with my parents over lunch, and getting some major chores done at home. All of that and time to take the kids to the pumpkin ranch after school and a treat for me to end my day with yoga. Wait, the day ended running around looking for the perfect sneakers for my darling dragon superhero.
Kids are really lucky, they have someone thinking about them and figuring this stuff out. Well, I realize not all kids have this luxury. Yes, I just called your parenting in all its flawed wisdom a luxury. So what happens when you wish you were a kid? What happens when you have a really big decision that no one can make but you. However, you really want to roll up in a ball and...well...actually you don't. What do you do when you have to face the big bad world all by yourself when you really rather be out running a marathon? Wait that wasn't right either. You rather be painting, quilting, reading a book, or creating the i-Pad 3. I think what you do is look at your kids. What would you tell them to do? How would you perotect them from the big bad wolf?
No one's life is totally perfect. Yes, my life was pretty perfect somewhere in my twenties. But, it wasn't. In my twenties I was date raped, I drank too much and threw up which ended my drinking career before I was 21, was cheated on and then called every Saturday night at 2 am by the boy for four months, was diagnosed with Colitis after farting my way through the first dates with a boy I ended up dating for 18 months, my best friend moved away to North Dakota, I sprained both my knees during a collision while skiing, I got four speeding tickets, I botched a dozen job interviews, and I miscarried two babies. And, yes, my twenties are incredible. I graduated college, I got a teaching job that was incredible and made me smile more then it made me cry, my art was shown in a New York gallery, I was a member of a gallery co-op, I learned to quilt, I fell in love, I got married, I fell in love twice more to two beautiful babies, and I moved into my dream house full of my own artwork with Long's Peak right out in my backyard. Heck, the first couple of years in the thirties weren't too bad either.
So when you ask, what should I do? Ask yourself, what have I always done? Then filter that to a simple lesson you would tell your kids and va la. Yes, each day is a mission, a mission impossible. So put on your silver sneakers and run into the fire. And, for heaven's sake, when your parents ask you to meet them for lunch, don't tell them you have too much to get done around the house. No, call them right back and tell them you will see them in ten minutes. But then, 90 minutes later, tell them you need to go and take care of a few of those must-dos that keep your space at peace. Each day is filled with moments of everyday super heroism. Yet, there is a balance. Fold away your cape or apron at the end of the day and just be with yourself for a moment. Recharge those batteries. Tomorrow is another day of simple heroics.
And the shoes, well, I had a hard time deciding if it was my immense love for my son or sure will for self preservation to send me running out at 8:30 pm to three stores, closing the last at 10 pm, and scoring a lace up sneaker that may bridge the old-too-tights and the new-but-can't-return-them-because-he-wore-them-out-of-the-store-but-they-are-way-too-big shoes. Well, this also ended divinely by mediating the usual morning drama of poorly fitting shoes and socks. Did I say he got new socks too? The claim of my darling when asked how his shoes worked out at school today was, "They worked great and made me run really fast when I was chasing the girls." Oh, boy. I heard later at conferences that he may have gotten a tinsee bit of trouble for the chasing.
So I have learned this week that all a boy needs to give him superpowers is well fitting silver sneakers. The fairy of the house is a bit more complicated. Well, isn't the common social stigma of the fairer gender one of complexity and headaches? My little female is quite simple really. She doesn't need a knight riding in on a white horse. No, she needs her mommy's cuddles. When she is feeling stressed, she needs her blankets. She sneaks quietly in my bed about 5 in the morning when it is dark and falls quickly back asleep. I look at her little face as the sun rises and see the newborn baby I held nearly seven and half years ago. She was a preemie. I had to wrap her up super tight in a swaddling blanket for five weeks or she would wail with much discontent. But, if she was rolled in her blanket with her little knit cap that fit on the end of my fist so that all you could see was her face, she slept contently. We called her Burrito Baby. I will have to tell her future husband to be sure to have afghans all around the house. If she is upset, all he has to do is wrap her up and hold her until the tide waters recede.
It is apparent to me as a parent that my children are amazing beings. They are stressed and anxious lately as they must know that Mommy is worried. Yet, somewhere between the sibling rivalry and the drama, they find their inner strength to teach me a few things. "Start with the end in mind, Momma. That is what we are supposed to do at school." They are learning the seven healthy habits and this is habit two, I think. So Monday, I moved my yoga time to the evening after they have gone to bed so I could spend my time volunteering at school, connecting with my parents over lunch, and getting some major chores done at home. All of that and time to take the kids to the pumpkin ranch after school and a treat for me to end my day with yoga. Wait, the day ended running around looking for the perfect sneakers for my darling dragon superhero.
Kids are really lucky, they have someone thinking about them and figuring this stuff out. Well, I realize not all kids have this luxury. Yes, I just called your parenting in all its flawed wisdom a luxury. So what happens when you wish you were a kid? What happens when you have a really big decision that no one can make but you. However, you really want to roll up in a ball and...well...actually you don't. What do you do when you have to face the big bad world all by yourself when you really rather be out running a marathon? Wait that wasn't right either. You rather be painting, quilting, reading a book, or creating the i-Pad 3. I think what you do is look at your kids. What would you tell them to do? How would you perotect them from the big bad wolf?
No one's life is totally perfect. Yes, my life was pretty perfect somewhere in my twenties. But, it wasn't. In my twenties I was date raped, I drank too much and threw up which ended my drinking career before I was 21, was cheated on and then called every Saturday night at 2 am by the boy for four months, was diagnosed with Colitis after farting my way through the first dates with a boy I ended up dating for 18 months, my best friend moved away to North Dakota, I sprained both my knees during a collision while skiing, I got four speeding tickets, I botched a dozen job interviews, and I miscarried two babies. And, yes, my twenties are incredible. I graduated college, I got a teaching job that was incredible and made me smile more then it made me cry, my art was shown in a New York gallery, I was a member of a gallery co-op, I learned to quilt, I fell in love, I got married, I fell in love twice more to two beautiful babies, and I moved into my dream house full of my own artwork with Long's Peak right out in my backyard. Heck, the first couple of years in the thirties weren't too bad either.
So when you ask, what should I do? Ask yourself, what have I always done? Then filter that to a simple lesson you would tell your kids and va la. Yes, each day is a mission, a mission impossible. So put on your silver sneakers and run into the fire. And, for heaven's sake, when your parents ask you to meet them for lunch, don't tell them you have too much to get done around the house. No, call them right back and tell them you will see them in ten minutes. But then, 90 minutes later, tell them you need to go and take care of a few of those must-dos that keep your space at peace. Each day is filled with moments of everyday super heroism. Yet, there is a balance. Fold away your cape or apron at the end of the day and just be with yourself for a moment. Recharge those batteries. Tomorrow is another day of simple heroics.
Saturday, October 8, 2011
Mother Tiger
"But, I have to have it done well before Halloween because I have two little kids and it is important."
I found myself saying this several times today to my shipmates. Being a parent survivor is like driving the Titanic. In the end, it is all about them. They are my navigators. Without them, I am lost. I worked a bit today to try to communicate that no matter what is needed, I need to be a mom and therefore, treatment needed to be done on my time, on my kids' time. Back two and a half years ago, I just said, "Yes, fix me. Do it whenever you want."
During the early part of the day, I had come to terms with Cyber Knife treatment. After all, it is pretty much a miracle. So late tonight at 7:30, while I was having dinner with two other families after soccer practice, my phone rings. Finally, it is my oncologist. Returning from his vacation, he has time to review my case and talked to the neurosurgeon while he was on the train returning from his moose hunting. So to confuse me more, he spoke of it being time for full brain radiation. I will have to admit this freaks me out when I over heard some doctor saying something about issues with stuttering, memory, etc. I believe it was my young women's breast oncologist who said it would be a last resort as it would cause more issues then the targeted radiation of Cyber Knife.
Well, at any rate, my oncologist is now on board my ship. All I ask is that you all get your brains going on the same page. All four of you. Save my life. No, save my mother super powers. Man, this is freakin' hard. Off for a nice weekend inspite of the turn in the weather for the bitter cold. Monday. I should know something Monday.
By the way, did you know that I found out from the general surgeon that my biopsies were malignant when my cell phone vibrated in my back pocket when I was out with friends at an art opening, it was 7:30 pm.
I found myself saying this several times today to my shipmates. Being a parent survivor is like driving the Titanic. In the end, it is all about them. They are my navigators. Without them, I am lost. I worked a bit today to try to communicate that no matter what is needed, I need to be a mom and therefore, treatment needed to be done on my time, on my kids' time. Back two and a half years ago, I just said, "Yes, fix me. Do it whenever you want."
During the early part of the day, I had come to terms with Cyber Knife treatment. After all, it is pretty much a miracle. So late tonight at 7:30, while I was having dinner with two other families after soccer practice, my phone rings. Finally, it is my oncologist. Returning from his vacation, he has time to review my case and talked to the neurosurgeon while he was on the train returning from his moose hunting. So to confuse me more, he spoke of it being time for full brain radiation. I will have to admit this freaks me out when I over heard some doctor saying something about issues with stuttering, memory, etc. I believe it was my young women's breast oncologist who said it would be a last resort as it would cause more issues then the targeted radiation of Cyber Knife.
Well, at any rate, my oncologist is now on board my ship. All I ask is that you all get your brains going on the same page. All four of you. Save my life. No, save my mother super powers. Man, this is freakin' hard. Off for a nice weekend inspite of the turn in the weather for the bitter cold. Monday. I should know something Monday.
By the way, did you know that I found out from the general surgeon that my biopsies were malignant when my cell phone vibrated in my back pocket when I was out with friends at an art opening, it was 7:30 pm.
Thursday, October 6, 2011
Fast Train
To be clear, we are on the fast train. My afternoon was spent ont he phone setting up appointments, asking my oncologist's PA if she and the doc were clued in on the matter of my brain, and understanding more about my brain matters. My old spot on my pons in the middle of my head on top of my brain stem, sitting next to the control center for the movement of my left eye, has grown by a milimeter. The tumor at the front left temporal lobe is actually growing pretty quickly. So yes, we are on the fast train. I already had my eye appointment sent up for next week. It was supposed to just be a health check but now is an information check into the personality of these tumors. I also had an oncology appointment and infusion already set up for Thursday to check the odd bumpy dermal tissue I had screened with an ultrasound two weeks ago. The tissue did turn out to be normal and just oddly bumpy all of a sudden. I am about ready to lobe these things off. So here we go. Fast train with four doctor appointments next week. In the end I will fill up my last two days of little commitment to art. Yes, this will be a speed bump that will probably slow me down the month of October. By Thanksgiving, I will hopefully be back in the Birkum yoga studio and maybe even taking a winter jog. But, really scares me about this is that if I pulled out a calendar I would find that I laid out on a table to be scanned, treated, and sent off to mend every four to six months. Is this what is to be my life? It makes me feel like my life is just not as long as I hoped as I wonder how much this body will last being blasted. Well, anyway, you know me, I will smile through. I will be conflicted inside whether I am proud or sad when I over hear my kids talking upstairs and say, "When mom dies..." I don't really want to know what they were talking about or what they meant. And, I am glad they are processing because it maybe true before they are ready. And, yes, today, I prayed during my meditation at the close of my yoga practice. I asked God to keep me around a bit more because of all of you. I love you all. And, I hate being the source of sadness. Well, I am glad I got that off my chest so I can go to sleep. No, I don't feel like editting so take it here all in the raw as it is. I hate being on the fast train and really have no idea how I am doing. I only know that when my "big brother" walked next to me while we walked our kids to school, put his arm around my shoulder and then kissed the top of my head only as a big brother would, I almost lost it. But I didn't, I choked up then swallowed it down deep and moved through the crowd of parents and students.
Tuesday, October 4, 2011
It's Complicated
When I was a junior in high school, I fell in love with a boy who played the guitar. He had long flowing hair and put notes in my car windshield before school to tell me how special I was. Did I tell you he lived nearly 30 minutes north? But, it was complicated.
I had been seeing a boy since spring my sophomore year. He was tall at six foot five inches and had the most killer smile. He wasn't too creative in the dating and wooing of, well, me. I fact, I think the number of times we saw each other over the summer I could count on one hand. My mom teased me endlessly as I called him sometime mid-July, and his excuse of why he was too busy to go to a movie was he was chasing rabbits out of his mom's garden. "Bunny tail is more like it." The sad thing is he actually was chasing rabbits as my sister's boyfriend was his best friend and confirmed the claim for lack of attention we both were receiving that summer. At any rate, I liked him a bunch and made sure we had weekly dates and bi-weekly phone calls come fall.
So I met the boy who played guitar in February. My heart raised up into my head and made me crazy when he walked in the room. It was Valentine's when I returned from a ski trip with my youth group and the long haired guitar playing dude who was stealing my heart. There, on my bed, my mom left a present the tall drink of water hand delivered the day before. There it was, a poem. An iambicpitameter poem mentioning my name three times written in his British Literature class. There it was an omission that his heart was all mine. But, it was complicated. My heart was just stolen by an unexplained force of coincidence.
So why in the world am I telling you this story? It is pretty simple, I am distracting myself. I have some news to share and not sure how to go about it as it is complicated. You know how we all cheered sometime in May that I was in remission? Well, it turns out that it was a lie. Okay, it is more like an misinformed assumption. I have another spot in my head. After my MRI in August the day before school started, I had a visit with my Longmont oncologist. All news was good according to the reports of all doctors on my ship. I was going to have an appointment with the neurosurgeon, but he got held up in surgery, and it was postponed. So, being as all the reports were in my file for the oncologist to review and summarize, I went all skipping through the meadow singing The Hills are Alive with way more zest the Julie Andrews.
Ten days later, or something like that, I finally had my rescheduled appointment with he neurosurgeon. He's pretty busy so I sat with his PA, Eric as he looked over my MRI slides. A high five was exchanged. Then a look of...heck...I don't know anymore...just a look was exchanged. Eric dashed off asking me to wait just a sec. I looked at my watch and remarked that I needed to get out of that office in 30 minutes to pick up my children from school. Eric returned with a giant red laptop. There was a new spot on the same slide as my one of the pons spot just behind my left eye.
So to get to the punch line, the Italian doctor, who really doesn't understand my sense of humor, ordered another MRI. As I exited the office in a slight dash to go get the kiddos, I over heard Dr. V. say, "No don't do that, it would be a two hour MRI. I wouldn't do that to her. Only get the area two ceintmeters on either side of the pons." Being as my MRI last week was nearly an hour long, I am so glad for the clarification to only get the tight slides in the one area of my head that is smack dab in the middle of my grey matter.
Boom, and week of waiting, and we arrive at today. Let's just say it is complicated. Just about as complicated as a 16 year old girl in love with two really cool and totally different guys. Did I tell you that the guitar playing guy who stole my heart from the tall drink of water was only about two inches taller then my five three posture? It looks like there was actually a void in the area of the "new" spot back in December. Okay, so it has been growing in my head undetected by the powers that be for over six months. That is one point for the cons. It is located close to my derma-something-or-other and likely bignin. One point score for the pros. It is in an area of useless brain matter that apparently the surgeon removes completely all the time with minimal issues. Score two to one, pros. It could be Cyber Knifed. Three to one. It is super close to my left eye and the process of radiating it with the Cyber Knife could cause serious vision issues. Three to two. It is growing which may implicate that the drugs I am on aren't doing their job. Three to three, it is a tie for major suckage. Alright, so a last note, it appears my tumor in the pons, the one Cyber Knifed in December, is growing as well.
So what is the plan? It is complicated. Pending the neurosurgeon's return from his moose hunting trip, we wait. An MRI is pending for six weeks the first week of November. So we wait until the docs all get on my ship and navigate it like pirates avoiding the icebergs. I have asked Dr. Borges at University Hospital to captain this ship so will probably be running down there in the coming week or so. Yes, we wait. Starting to sound like March 2009, when I knew I had breast cancer but no idea what was going to happen for a good six weeks time as I dodged in and out of doctor offices, gathered evidence and predictions like a CSI, and cried myself a river at the top on my stairs while the kids ran below me whining about being hungry for snack.
Yep, we have been here before. It's complicated. So pray, meditate, or go beg Mother Nature to send the most beautiful weather in the world to God's Country so I can revel in its glory. And, please let me know if you notice my eyes doing crazy summersaults or my right side of my body freaks out of control. Ah, the best part of tumors in my brain is there is a lot of useless territory. Here's to praying me spots stay there, react well to treatment, I keep my hair, and I continue to mimic the smart guiness that I am.
When you ask if I am alright, I will reply simple, "No, but it will be." And that, my folks, is how it is done. That is how a sixteen year old girl decided that the guitar playing shorty with a big heart got her undivided attention but only after she committed to a proper break-up scene in the Little Ceasar's parking lot and two weeks of morning the lose of a really sweet, tall drink of water.
Oh, PS, don't forget to go to the show The Journey, Celebrating the Healing Power of Art at the Muse Gallery in Longmont. Opening reception is October 14. I will have three pieces in the show.
I had been seeing a boy since spring my sophomore year. He was tall at six foot five inches and had the most killer smile. He wasn't too creative in the dating and wooing of, well, me. I fact, I think the number of times we saw each other over the summer I could count on one hand. My mom teased me endlessly as I called him sometime mid-July, and his excuse of why he was too busy to go to a movie was he was chasing rabbits out of his mom's garden. "Bunny tail is more like it." The sad thing is he actually was chasing rabbits as my sister's boyfriend was his best friend and confirmed the claim for lack of attention we both were receiving that summer. At any rate, I liked him a bunch and made sure we had weekly dates and bi-weekly phone calls come fall.
So I met the boy who played guitar in February. My heart raised up into my head and made me crazy when he walked in the room. It was Valentine's when I returned from a ski trip with my youth group and the long haired guitar playing dude who was stealing my heart. There, on my bed, my mom left a present the tall drink of water hand delivered the day before. There it was, a poem. An iambicpitameter poem mentioning my name three times written in his British Literature class. There it was an omission that his heart was all mine. But, it was complicated. My heart was just stolen by an unexplained force of coincidence.
So why in the world am I telling you this story? It is pretty simple, I am distracting myself. I have some news to share and not sure how to go about it as it is complicated. You know how we all cheered sometime in May that I was in remission? Well, it turns out that it was a lie. Okay, it is more like an misinformed assumption. I have another spot in my head. After my MRI in August the day before school started, I had a visit with my Longmont oncologist. All news was good according to the reports of all doctors on my ship. I was going to have an appointment with the neurosurgeon, but he got held up in surgery, and it was postponed. So, being as all the reports were in my file for the oncologist to review and summarize, I went all skipping through the meadow singing The Hills are Alive with way more zest the Julie Andrews.
Ten days later, or something like that, I finally had my rescheduled appointment with he neurosurgeon. He's pretty busy so I sat with his PA, Eric as he looked over my MRI slides. A high five was exchanged. Then a look of...heck...I don't know anymore...just a look was exchanged. Eric dashed off asking me to wait just a sec. I looked at my watch and remarked that I needed to get out of that office in 30 minutes to pick up my children from school. Eric returned with a giant red laptop. There was a new spot on the same slide as my one of the pons spot just behind my left eye.
So to get to the punch line, the Italian doctor, who really doesn't understand my sense of humor, ordered another MRI. As I exited the office in a slight dash to go get the kiddos, I over heard Dr. V. say, "No don't do that, it would be a two hour MRI. I wouldn't do that to her. Only get the area two ceintmeters on either side of the pons." Being as my MRI last week was nearly an hour long, I am so glad for the clarification to only get the tight slides in the one area of my head that is smack dab in the middle of my grey matter.
Boom, and week of waiting, and we arrive at today. Let's just say it is complicated. Just about as complicated as a 16 year old girl in love with two really cool and totally different guys. Did I tell you that the guitar playing guy who stole my heart from the tall drink of water was only about two inches taller then my five three posture? It looks like there was actually a void in the area of the "new" spot back in December. Okay, so it has been growing in my head undetected by the powers that be for over six months. That is one point for the cons. It is located close to my derma-something-or-other and likely bignin. One point score for the pros. It is in an area of useless brain matter that apparently the surgeon removes completely all the time with minimal issues. Score two to one, pros. It could be Cyber Knifed. Three to one. It is super close to my left eye and the process of radiating it with the Cyber Knife could cause serious vision issues. Three to two. It is growing which may implicate that the drugs I am on aren't doing their job. Three to three, it is a tie for major suckage. Alright, so a last note, it appears my tumor in the pons, the one Cyber Knifed in December, is growing as well.
So what is the plan? It is complicated. Pending the neurosurgeon's return from his moose hunting trip, we wait. An MRI is pending for six weeks the first week of November. So we wait until the docs all get on my ship and navigate it like pirates avoiding the icebergs. I have asked Dr. Borges at University Hospital to captain this ship so will probably be running down there in the coming week or so. Yes, we wait. Starting to sound like March 2009, when I knew I had breast cancer but no idea what was going to happen for a good six weeks time as I dodged in and out of doctor offices, gathered evidence and predictions like a CSI, and cried myself a river at the top on my stairs while the kids ran below me whining about being hungry for snack.
Yep, we have been here before. It's complicated. So pray, meditate, or go beg Mother Nature to send the most beautiful weather in the world to God's Country so I can revel in its glory. And, please let me know if you notice my eyes doing crazy summersaults or my right side of my body freaks out of control. Ah, the best part of tumors in my brain is there is a lot of useless territory. Here's to praying me spots stay there, react well to treatment, I keep my hair, and I continue to mimic the smart guiness that I am.
When you ask if I am alright, I will reply simple, "No, but it will be." And that, my folks, is how it is done. That is how a sixteen year old girl decided that the guitar playing shorty with a big heart got her undivided attention but only after she committed to a proper break-up scene in the Little Ceasar's parking lot and two weeks of morning the lose of a really sweet, tall drink of water.
Oh, PS, don't forget to go to the show The Journey, Celebrating the Healing Power of Art at the Muse Gallery in Longmont. Opening reception is October 14. I will have three pieces in the show.
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