My mother taught me to be consciously subversive instead of mindlessly indignant. To participate in a corrupt system in the hopes of either changing it or bringing it down, rather than simply giving up and walking away. Come to think of it, this idea is rather reminiscent of what she told me when I was a child regarding the purpose of the Bodhisattva: to willfully participate in the sorrows of the world, for the benefit of the unenlightened.
But there are broken systems, corrupt, horribly dysfunctional, poisonous systems which I know that I myself am not rich or influential enough to change or bring down within my lifetime; our healthcare system (with "non-profit" hospitals making millions of dollars off of the desperate and ailing masses to fill billionaire CEO's pockets), our political system (run by shady lobbyists for the benefit of whoever has the most money to get their interests to be priority), and our education system (which teaches our children how to listen to the experts with quiet reverence, how to regurgitate "facts", how to disconnect at the ring of a bell, how to be good little consumers and service industry workers, how to follow the rules without question.) And that's just to name the big three.
But I've come to realize that I've found my own way to be truly subversive. What could be more damaging to the status quo than self sufficiency and valuing things that are not things? I am a stay at home mother who raises chicken and livestock for food, with plans of gardening and preserving her own fruits and vegetables come summer. This is the way I've found that I can make my positive difference, here and now, with what little I have: fighting consumerism, reinforcing the importance of self-reliance and responsibiltiy, and most importantly, raising my son, our future, to love life, nature, and family over the endless pursuit of wealth and possessions.
I know there are other small things one can to to change the world. Things that don't cost a cent. Speak up, in any way you can, against injustice. Smile at everyone you see. Be empathetic, always. Take time to be still and introspective, questioning your motives and goals.
But most importantly, to quote Kurt Vonnegut: "Damn it, you've got to be kind."
Tuesday, March 12, 2013
Monday, December 3, 2012
The Yin and The Yang
On one hand, babies seem to thrive on chaos. Jasper upturns baskets full of toys with glee, dumps drawers joyfully and flings my neatly folded laundry into crumpled piled behind him with squeels of happiness. Luckily, I love to organize. (It calms my mind, which is something I need these days.) I love neatly stacking things, putting stray objects into containers, straightening book spines and stuffed toys. So as you can imagine, it all works out.
On the other hand, babies thrive on normalcy, routine (to a point), and most of all, repetition. I am not a routine type of person, generally. This comes in handy in a few areas of our life, as I feed Jazz when he acts hungry, not based on a clock, and put him down for naps when he acts tired, not based on any predetermined time. I just follow his lead, watch for his cues and act accordingly, and it feels right. We do have our routines, though. Bedtime starts at 7:30, with solids (in which his interest waxes and wanes) then bath, lotion, jammies, bottle, book, bed. I try to keep this pretty rigid, in the hopes that his overnight sleeping will improve. It has, slightly. He's still up 4 or so times at night, crying out, reaching for me. (still better than hourly) I'm exhausted, and some days it's hard to deal with. But I remind myself that it won't be like this forever. Some day he won't need me like this anymore, and I know I will feel a pang of sadness, against all logic and understanding, remembering the time when I was the one thing he needed. Snuggling him and feeling him breathe next to me, kissing his head while he slumbers, I try to remind myself of this fact. While I will feel relief once he sleeps through the night, relief in finally being rested, finally getting to sleep next to my husband, I know I will miss being needed this way.
I guess the conclusion I'm coming to in that Jasper and I balance each other out pretty well. And one of the very few things I know in this world is that balance brings harmony, and harmony brings happiness. And of all of the things in my life right now that are precariously unbalanced, maddeningly unharmonious, this, Jasper and I, we are a much needed, neat little yin yang.
On the other hand, babies thrive on normalcy, routine (to a point), and most of all, repetition. I am not a routine type of person, generally. This comes in handy in a few areas of our life, as I feed Jazz when he acts hungry, not based on a clock, and put him down for naps when he acts tired, not based on any predetermined time. I just follow his lead, watch for his cues and act accordingly, and it feels right. We do have our routines, though. Bedtime starts at 7:30, with solids (in which his interest waxes and wanes) then bath, lotion, jammies, bottle, book, bed. I try to keep this pretty rigid, in the hopes that his overnight sleeping will improve. It has, slightly. He's still up 4 or so times at night, crying out, reaching for me. (still better than hourly) I'm exhausted, and some days it's hard to deal with. But I remind myself that it won't be like this forever. Some day he won't need me like this anymore, and I know I will feel a pang of sadness, against all logic and understanding, remembering the time when I was the one thing he needed. Snuggling him and feeling him breathe next to me, kissing his head while he slumbers, I try to remind myself of this fact. While I will feel relief once he sleeps through the night, relief in finally being rested, finally getting to sleep next to my husband, I know I will miss being needed this way.
I guess the conclusion I'm coming to in that Jasper and I balance each other out pretty well. And one of the very few things I know in this world is that balance brings harmony, and harmony brings happiness. And of all of the things in my life right now that are precariously unbalanced, maddeningly unharmonious, this, Jasper and I, we are a much needed, neat little yin yang.
Tuesday, November 27, 2012
No rest for the wicked
My goodness. Has it really been over a year since I've written? I guess that shows how chemo brain (plus mommy brain) can effect one's ability to write. I just began really getting back to reading, as well. My thoughts and memory are a mess, and it's definitely been difficult coping with this new foggy brain so much treatment has left me with. Anyhoo, I guess this is my attempt to start writing again.
Jasper. We call him Jazz. He's almost 9 months old, and I am like every single other mother out there when I say that he is amazing. He's tall and skinny, strong, smart, sweet, funny, talkative, energetic, incredibly happy and very strong-willed. He has taught me so much about patience and the unbelievable lengths of love. His eyes are ice blue, with a quarter of brown in the left. He babbles, saying da da and ma ma and the occational ba and ya. He crawls everywhere, pulls up on everything, and excitedly chases the cat when the feline gets brave enough to venture downstairs. His two front teeth came in just before Thanksgiving, and he's already working on both lateral incisors. No half-assing it for this kid!
I gave birth epidural-free at The Birth and Women's center after 48 hours of labor. Brandon was my rock. He reminded me to keep my mouth loose and moans low, and was an all around amazing labor partner. Jasper came into the world early in the morning on March 4th, small and skinny, dark red-skinned and silent, with a full head of brown hair. I felt him slide, warm and tiny, onto my chest, and I stroked him, telling him "Welcome, baby. I love you, I love you, I love you." He wasn't breathing well, so we spent a day and a night at the NICU, but it was mostly a precaution. He was fine. So strong, from the second he was earth-side.
I know it's been said a million times before, but I've never known love this strong, this unrelenting.
That being said, being a mother is the hardest job I've ever had. I've always been a perfectionist, and nowadays I'm a terrible multitasker. Parenthood is teaching me not to quit, even when things aren't perfect. Quitting isn't even an option. So I just try to wake up every day and be the best I can for Jazz and Brandon. And when it comes to my inability to multi task, well, it just explains my complete lack of a social life. Being a stay at home mom is overwhelming enough. Not to mention, he just stopped waking up 7-12 times a night in the last few weeks, down to about 4-5 wake-ups a night (when he's not teething.) I'm exhausted. But I know I'll get there, back into the world. Soon. Until then, I'm doing what I do best: taking it one day at a time.
Jasper. We call him Jazz. He's almost 9 months old, and I am like every single other mother out there when I say that he is amazing. He's tall and skinny, strong, smart, sweet, funny, talkative, energetic, incredibly happy and very strong-willed. He has taught me so much about patience and the unbelievable lengths of love. His eyes are ice blue, with a quarter of brown in the left. He babbles, saying da da and ma ma and the occational ba and ya. He crawls everywhere, pulls up on everything, and excitedly chases the cat when the feline gets brave enough to venture downstairs. His two front teeth came in just before Thanksgiving, and he's already working on both lateral incisors. No half-assing it for this kid!
I gave birth epidural-free at The Birth and Women's center after 48 hours of labor. Brandon was my rock. He reminded me to keep my mouth loose and moans low, and was an all around amazing labor partner. Jasper came into the world early in the morning on March 4th, small and skinny, dark red-skinned and silent, with a full head of brown hair. I felt him slide, warm and tiny, onto my chest, and I stroked him, telling him "Welcome, baby. I love you, I love you, I love you." He wasn't breathing well, so we spent a day and a night at the NICU, but it was mostly a precaution. He was fine. So strong, from the second he was earth-side.
I know it's been said a million times before, but I've never known love this strong, this unrelenting.
That being said, being a mother is the hardest job I've ever had. I've always been a perfectionist, and nowadays I'm a terrible multitasker. Parenthood is teaching me not to quit, even when things aren't perfect. Quitting isn't even an option. So I just try to wake up every day and be the best I can for Jazz and Brandon. And when it comes to my inability to multi task, well, it just explains my complete lack of a social life. Being a stay at home mom is overwhelming enough. Not to mention, he just stopped waking up 7-12 times a night in the last few weeks, down to about 4-5 wake-ups a night (when he's not teething.) I'm exhausted. But I know I'll get there, back into the world. Soon. Until then, I'm doing what I do best: taking it one day at a time.
Monday, October 17, 2011
Feathering the nest
So I guess the best way to describe what I've been busy with lately is nesting.
Brandon and I have been working on the house a lot, cleaning, organizing, making space. The garage sale definitely freed up some area in the storage room, but we still have a ways to go to make room for baby. Aside from that, I've been acquiring and filling out paperwork: marriage license stuff, applying for food assistance (we've definitely been racking our brains trying to figure out how to live on one Barista's meager salary), trying to figure out if I'm getting the right Medicaid coverage for my new non-cancerous situation. It's a freaking full time job.
On top of those recent activities, we have an ultrasound scheduled Thursday, where hopefully we'll find out the gender! Squee! Although, from what I've seen so far, the little one does NOT like to be bothered, thankyouverymuch. Anytime we've tried to listen to it's heartbeat, it kicks the probe! Let's hope it feels like showing off come Thursday. After the ultrasound, we'll start going to the Birth and Women's Center for our prenatal care and eventually, delivery. Some people think I'm crazy for wanting a birth outside a hospital without being numbed up and drugged out, but I just feel very comfortable at the birthing center. It's not sterile and reeking of alcohol. No stainless steel and beeps of monitors. It feels right. The way I see it is, I'm not sick anymore. And seeing as hospitals are for sick people, (and I'm not even considered high risk) I don't see a need to be in a hospital for this amazing event. Hospitals are for treating and curing disease, and for the first time in a long while, I'm disease free. The last thing I want is to turn the most natural process in the world into something involving tubes hanging out of me. Bad memories, you know? Anyhoo, after the 28 week mark, we start having appointments every two weeks instead of every four, and then there are birthing classes to attend, and I still have my check ups at the Cancer Center... whew. Busy busy, you see?
On top of all of that, I'm still hanging on to a couple of shifts at PT's. Although it's slowly been getting harder and harder to work my two little four-hour shifts a week lately. I feel like I never really got a chance to recover fully from the transplant when it comes to strength, energy and stamina, and now that I'm getting larger by the week, (and oh, how those abdominal muscles are stretching...) the little tasks that are integral to being a Barista are getting more challenging to do. You know, I didn't really realize how much strength and stamina working at a coffee shop took until the first round of cancer treatment. The all-around fast-paced environment, walking and standing all day, the repetitive arm motion of dosing out espresso, the abdominal muscles used for tamping, the strength it takes to lift an air pot full of coffee... it's a physically demanding job. You just don't notice when you're normal and healthy. Being a Barista, if you're a good one, is non-stop. Even when it's a slow day, you're washing dishes, taking out heavy loads of trash, wiping down tables, deep cleaning, sweeping, stocking... I managed to keep up while going through chemo and radiation the first time, (barely, some days) but honestly, I feel like I never really was able to preform as well after the transplant. Before I got back to 100%, I got pregnant. So, basically, I think my time has finally come to leave the wonderful world of Barista-ing behind me. I know I'm going to miss it big time, but I also know that my PT's family will still be there for me even if I'm not on the payroll anymore. I really do feel like PT's is my family. They will always live true to their motto: "Without the love, it's just coffee."
Besides, I'm giving up my 6 ounces of daily coffee cold turkey starting November 1st until I'm done breastfeeding. Eeek! You, know, I'm thinking I should probably just stay in bed for that week so no one has to deal with the grumpy pregnant chick going through withdrawal. But anything for the wee one, I say. :)
Well, I've rambled long enough. There is laundry to finish and home-made banana bread to be eaten. Next time I check in, I'll be knee-deep in either boy or girl baby names!
Much love!
Brandon and I have been working on the house a lot, cleaning, organizing, making space. The garage sale definitely freed up some area in the storage room, but we still have a ways to go to make room for baby. Aside from that, I've been acquiring and filling out paperwork: marriage license stuff, applying for food assistance (we've definitely been racking our brains trying to figure out how to live on one Barista's meager salary), trying to figure out if I'm getting the right Medicaid coverage for my new non-cancerous situation. It's a freaking full time job.
On top of those recent activities, we have an ultrasound scheduled Thursday, where hopefully we'll find out the gender! Squee! Although, from what I've seen so far, the little one does NOT like to be bothered, thankyouverymuch. Anytime we've tried to listen to it's heartbeat, it kicks the probe! Let's hope it feels like showing off come Thursday. After the ultrasound, we'll start going to the Birth and Women's Center for our prenatal care and eventually, delivery. Some people think I'm crazy for wanting a birth outside a hospital without being numbed up and drugged out, but I just feel very comfortable at the birthing center. It's not sterile and reeking of alcohol. No stainless steel and beeps of monitors. It feels right. The way I see it is, I'm not sick anymore. And seeing as hospitals are for sick people, (and I'm not even considered high risk) I don't see a need to be in a hospital for this amazing event. Hospitals are for treating and curing disease, and for the first time in a long while, I'm disease free. The last thing I want is to turn the most natural process in the world into something involving tubes hanging out of me. Bad memories, you know? Anyhoo, after the 28 week mark, we start having appointments every two weeks instead of every four, and then there are birthing classes to attend, and I still have my check ups at the Cancer Center... whew. Busy busy, you see?
On top of all of that, I'm still hanging on to a couple of shifts at PT's. Although it's slowly been getting harder and harder to work my two little four-hour shifts a week lately. I feel like I never really got a chance to recover fully from the transplant when it comes to strength, energy and stamina, and now that I'm getting larger by the week, (and oh, how those abdominal muscles are stretching...) the little tasks that are integral to being a Barista are getting more challenging to do. You know, I didn't really realize how much strength and stamina working at a coffee shop took until the first round of cancer treatment. The all-around fast-paced environment, walking and standing all day, the repetitive arm motion of dosing out espresso, the abdominal muscles used for tamping, the strength it takes to lift an air pot full of coffee... it's a physically demanding job. You just don't notice when you're normal and healthy. Being a Barista, if you're a good one, is non-stop. Even when it's a slow day, you're washing dishes, taking out heavy loads of trash, wiping down tables, deep cleaning, sweeping, stocking... I managed to keep up while going through chemo and radiation the first time, (barely, some days) but honestly, I feel like I never really was able to preform as well after the transplant. Before I got back to 100%, I got pregnant. So, basically, I think my time has finally come to leave the wonderful world of Barista-ing behind me. I know I'm going to miss it big time, but I also know that my PT's family will still be there for me even if I'm not on the payroll anymore. I really do feel like PT's is my family. They will always live true to their motto: "Without the love, it's just coffee."
Besides, I'm giving up my 6 ounces of daily coffee cold turkey starting November 1st until I'm done breastfeeding. Eeek! You, know, I'm thinking I should probably just stay in bed for that week so no one has to deal with the grumpy pregnant chick going through withdrawal. But anything for the wee one, I say. :)
Well, I've rambled long enough. There is laundry to finish and home-made banana bread to be eaten. Next time I check in, I'll be knee-deep in either boy or girl baby names!
Much love!
Wednesday, September 21, 2011
The only constant
So, maybe you've noticed my lack of blogging in the last 4 months. Sorry about that. Life has changed in about every way possible. Throw writer's block on top of that, and you have a very silent blog on your hands.
Brandon pointed out the other day that maybe I'm having trouble writing here because this isn't a cancer blog anymore. It's a "life after cancer" blog. It's a "done with cancer forever" blog. Maybe the reason I haven't been able to write is that this blog has to change as much as my life has. So, may I present to you... my "life after kicking cancer's ass" blog. Some important updates:
I got a clean CT scan in June. That's right. Get out and stay out, tumors!
There was something growing inside of me that the CT scan missed. I'm pregnant! More on that seeming impossibility in a bit.
I'm now engaged to a smart, devoted, caring man named Brandon. He was one of my caregivers while I went through my transplant in KC. His smiles and friendship got me through some of my darkest days. He's a born giver. He takes care of me, loves me, and loves to be with me every moment. Besides, how could you not fall in love with a man that says you're the most beautiful girl he's ever seen while you're bald, eyebrow-less, pale, have a tube hanging out of a hole in your chest, and are wearing a hospital mask? He's amazing. He's everything I've ever wanted. Gush gush gush.
Now back to the big news. I'm pregnant. You're probably thinking the same thing I was when I was holding that positive pregnancy test all those weeks ago: "Holy crap! Didn't the doctors say that was impossible?!" Yes, they made it pretty clear that the transplant would most likely make me completely infertile. The point was driven home when I experienced menopause from March through June. No period, constant hot flashes, the works. Well, it turns out that the universe had other plans. In fact, I was probably about four weeks along when I got my CT scan in June! I'm due February 28th, and I'm so so so excited. I thought that I would never get the chance to be a mother... that it was a gift that had been taken away in return for surviving. I thought the only thing that could grow inside of me was cancer. Sometimes, It's awesome to be wrong.
As of today, I am officially 17 weeks pregnant. In fact, this morning, I felt the baby kick! I placed Brandon's hand on my tummy, and watched his face light up as he felt the little movement, too. So freaking neat! I can't tell if the baby was so active because it's a morning person like me, or because it was annoyed that I was awake so damn early, like it's father. Either way, it was an experience that when I thought about it before it happened, seemed sort of creepy. But when I felt it, I knew immediately what it was. And it felt like the most natural thing in the world.
Anyhoo, I promise you this, faithful readers: I will be updating weekly. And while this blog will still have updates regarding clean scans, bloodwork and doctor's visits, it will mostly be about my life as a cancer survivor, (no longer cancer patient!) a wife, a mother, a coffee geek, a bookworm, and a person who is trying to fully and abundantly live a life that she fought for.
Everything has changed, and I couldn't ask for a better life. Change is inevitable and good. What is it that Joseph Campbell said?
"We must let go of the life we have planned, so as to have the life that is waiting for us."
Brandon pointed out the other day that maybe I'm having trouble writing here because this isn't a cancer blog anymore. It's a "life after cancer" blog. It's a "done with cancer forever" blog. Maybe the reason I haven't been able to write is that this blog has to change as much as my life has. So, may I present to you... my "life after kicking cancer's ass" blog. Some important updates:
I got a clean CT scan in June. That's right. Get out and stay out, tumors!
There was something growing inside of me that the CT scan missed. I'm pregnant! More on that seeming impossibility in a bit.
I'm now engaged to a smart, devoted, caring man named Brandon. He was one of my caregivers while I went through my transplant in KC. His smiles and friendship got me through some of my darkest days. He's a born giver. He takes care of me, loves me, and loves to be with me every moment. Besides, how could you not fall in love with a man that says you're the most beautiful girl he's ever seen while you're bald, eyebrow-less, pale, have a tube hanging out of a hole in your chest, and are wearing a hospital mask? He's amazing. He's everything I've ever wanted. Gush gush gush.
Now back to the big news. I'm pregnant. You're probably thinking the same thing I was when I was holding that positive pregnancy test all those weeks ago: "Holy crap! Didn't the doctors say that was impossible?!" Yes, they made it pretty clear that the transplant would most likely make me completely infertile. The point was driven home when I experienced menopause from March through June. No period, constant hot flashes, the works. Well, it turns out that the universe had other plans. In fact, I was probably about four weeks along when I got my CT scan in June! I'm due February 28th, and I'm so so so excited. I thought that I would never get the chance to be a mother... that it was a gift that had been taken away in return for surviving. I thought the only thing that could grow inside of me was cancer. Sometimes, It's awesome to be wrong.
As of today, I am officially 17 weeks pregnant. In fact, this morning, I felt the baby kick! I placed Brandon's hand on my tummy, and watched his face light up as he felt the little movement, too. So freaking neat! I can't tell if the baby was so active because it's a morning person like me, or because it was annoyed that I was awake so damn early, like it's father. Either way, it was an experience that when I thought about it before it happened, seemed sort of creepy. But when I felt it, I knew immediately what it was. And it felt like the most natural thing in the world.
Anyhoo, I promise you this, faithful readers: I will be updating weekly. And while this blog will still have updates regarding clean scans, bloodwork and doctor's visits, it will mostly be about my life as a cancer survivor, (no longer cancer patient!) a wife, a mother, a coffee geek, a bookworm, and a person who is trying to fully and abundantly live a life that she fought for.
Everything has changed, and I couldn't ask for a better life. Change is inevitable and good. What is it that Joseph Campbell said?
"We must let go of the life we have planned, so as to have the life that is waiting for us."
Monday, May 30, 2011
Monday, April 4, 2011
Day +21 (4/4/11)
An update for all you patient folks out there.
I was officially discharged back to Topeka on Wednesday last week (day +16, which is pretty damn early) and I had my trifusion catheter yanked last Friday. The hole in my chest is healing beautifully, which makes me think that my blood counts are rising.
I feel pretty good, all things considered. Being home makes such a huge difference. Having a whole house to be isolated in instead of a small room in an unfamiliar place has given me strength and energy that I didn't know I could have. Hope Lodge was an absolute blessing, and I'm so SO glad this ordeal wasn't inpatient. But it's good to be back.
There are still restrictions to follow. Neutropenic diet until +30 days post-transplant, no public places until the end of April (respiratory viruses floating around), no drinking alcohol for 3 months, limited sun exposure, no swimming for 9-12 months.
But I can go outside without a hospital mask on. I can feel the breeze on my face and smell springtime in Kansas. I can go to friends houses as long as there isn't a crowd of people or animal feces laying around. Life is good.
I have bloodwork and a doctor visit here in town at St. Francis tomorrow. I'm excited to see how much my blood counts have risen. A bit nervous about the possibility that they haven't.
I was officially discharged back to Topeka on Wednesday last week (day +16, which is pretty damn early) and I had my trifusion catheter yanked last Friday. The hole in my chest is healing beautifully, which makes me think that my blood counts are rising.
I feel pretty good, all things considered. Being home makes such a huge difference. Having a whole house to be isolated in instead of a small room in an unfamiliar place has given me strength and energy that I didn't know I could have. Hope Lodge was an absolute blessing, and I'm so SO glad this ordeal wasn't inpatient. But it's good to be back.
There are still restrictions to follow. Neutropenic diet until +30 days post-transplant, no public places until the end of April (respiratory viruses floating around), no drinking alcohol for 3 months, limited sun exposure, no swimming for 9-12 months.
But I can go outside without a hospital mask on. I can feel the breeze on my face and smell springtime in Kansas. I can go to friends houses as long as there isn't a crowd of people or animal feces laying around. Life is good.
I have bloodwork and a doctor visit here in town at St. Francis tomorrow. I'm excited to see how much my blood counts have risen. A bit nervous about the possibility that they haven't.
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