Kairol Rosenthal will be at Modern Times in the Mission next Wednesday to read from her book, Everything Changes. I will be there too, so if you are in the area, let's meet up and exchange horror stories...
My mom gifted me Everything Changes shortly after it came out. I had just finished treatment. I sifted through some of the pages thinking, "This would have been great a year ago". I wanted nothing to do with cancer, I wanted it to be solely in the past. So I put the book down and went on with my self proclaimed un-cancerous life.
But, Kariol's book is a resource for those who've already ridden the cancer roller coaster and lived to tell about it. One thing that is becoming more and more apparent is that I'll never rid myself of that death-defying thrill ride. It wasn't the cancer itself that was traumatic, it was the treatment. And, the treatment rarely cures us. It affords us more time, at the very least, and for that I am grateful.
I have been attempting to manage my chronic pain via Kaiser's services. It's slow going, with the majority of treatment lines requiring you to take weekly classes that have little to do with anything before you start the program. Once I'm past all of the red tape, I hope to learn to manage all of these nasty after-effects, both physical and psychological.
One quote in Everything Changes that perfectly encapsulated my sentiments:
"I felt like I had to fight for my right to be pain free. My Nurses made me feel like a drug addict after my bone marrow biopsy. 'Nobody else needs pain killers,' they said, all condescending. Sorry, but I'm the boss of my own body." -Dana Merk, 24
WORD!
Thursday, 18 February 2010
Thursday, 21 January 2010
Listen to your body, not your doctor.
Scan Results: NED. Woo! 8 months cancer free!
This hospital trip was slightly better. I was able to hold it together until the Asian lady at the bakery refused to serve me. Isn't that always the way it goes? You keep a straight face throughout the day, and then the tiniest insignificant obstacle causes a full blown shit-fest.
I gritted my teeth through the port flush. I asked my Onc about disability options and was denied (damn kids trying to abuse the system). I voiced my concern over worsening chronic pain in my hip/back/everywhere and, because my scans are clear, was not-so-subtly accused of opiate dependency (damn kids trying to abuse the system!). Because scans tell ALL, right? If the scan says I'm not in pain, I guess I'm not in pain.
So, feeling defeated despite the joyous news of N.E.D, I sought respite via coffee and pastries at the Kaiser cafe area. I order my shit. I have no cash. I am three dollars away from being able to use my debit card. "No card, under limit!!!" militant Asian lady snaps at me. I am unwilling to buy 4 more muffins just to be able to use my card. Defeated again, I ask, "can I have a cup of water?" She slams a little paper cup on the counter. "Fifty cent!!"
I stare at her. Are. You. Fucking. Kidding me. You will not give a cancer patient a mother fucking dixie cup? And then I lost it. Like, completely lost my shit and sat bawling, hungry, and humiliated in the cafe until I could pick up my prescription.
Moral of the story: If you are poor, always carry cash. If you are a cunt, don't work at a hospital.
So, back to my Onc visit. Now that I have hair and look like a normal twenty-something, I am noticing a massive amount of skepticism and disbelief when it comes to medical issues. There seems to be a general misconception that young people can't be trusted. We just want drugs and attention. People, even medical professionals, fail to realize that Chemo completely rapes and pillages your body, causing long-term issues unrelated to cancer. Chemotherapy annihilates cancer (if you're lucky) just as it annihilates the rest of your healthy cells.
If I were to listen to my Doctor, I would be taking Ibuprofen and hot baths for debilitating pain. I would assume the pain is all in my head. Which was exactly what I was told before my Cancer diagnosis.
I am angry about all of this. Livid. And I'm not quite sure what to do about it, suffice to say: Listen to your body, not your doctor. Do research yourself. Find your own solution. Make your own educated diagnosis. Get second and third opinions until you finally find someone who will listen. Don't sit back and suffer.
oh and p.s.- I'm still working on getting my computer fixed. Despite the rant above, I am so so happy to be in remission. I'll take my pain over cancer any day...
This hospital trip was slightly better. I was able to hold it together until the Asian lady at the bakery refused to serve me. Isn't that always the way it goes? You keep a straight face throughout the day, and then the tiniest insignificant obstacle causes a full blown shit-fest.
I gritted my teeth through the port flush. I asked my Onc about disability options and was denied (damn kids trying to abuse the system). I voiced my concern over worsening chronic pain in my hip/back/everywhere and, because my scans are clear, was not-so-subtly accused of opiate dependency (damn kids trying to abuse the system!). Because scans tell ALL, right? If the scan says I'm not in pain, I guess I'm not in pain.
So, feeling defeated despite the joyous news of N.E.D, I sought respite via coffee and pastries at the Kaiser cafe area. I order my shit. I have no cash. I am three dollars away from being able to use my debit card. "No card, under limit!!!" militant Asian lady snaps at me. I am unwilling to buy 4 more muffins just to be able to use my card. Defeated again, I ask, "can I have a cup of water?" She slams a little paper cup on the counter. "Fifty cent!!"
I stare at her. Are. You. Fucking. Kidding me. You will not give a cancer patient a mother fucking dixie cup? And then I lost it. Like, completely lost my shit and sat bawling, hungry, and humiliated in the cafe until I could pick up my prescription.
Moral of the story: If you are poor, always carry cash. If you are a cunt, don't work at a hospital.
So, back to my Onc visit. Now that I have hair and look like a normal twenty-something, I am noticing a massive amount of skepticism and disbelief when it comes to medical issues. There seems to be a general misconception that young people can't be trusted. We just want drugs and attention. People, even medical professionals, fail to realize that Chemo completely rapes and pillages your body, causing long-term issues unrelated to cancer. Chemotherapy annihilates cancer (if you're lucky) just as it annihilates the rest of your healthy cells.
If I were to listen to my Doctor, I would be taking Ibuprofen and hot baths for debilitating pain. I would assume the pain is all in my head. Which was exactly what I was told before my Cancer diagnosis.
I am angry about all of this. Livid. And I'm not quite sure what to do about it, suffice to say: Listen to your body, not your doctor. Do research yourself. Find your own solution. Make your own educated diagnosis. Get second and third opinions until you finally find someone who will listen. Don't sit back and suffer.
oh and p.s.- I'm still working on getting my computer fixed. Despite the rant above, I am so so happy to be in remission. I'll take my pain over cancer any day...
Tuesday, 5 January 2010
Fraud fun!
After more viewing I am POSITIVE this girl is a complete nut and hasn't gone through chemo.
I don't know whether to be impressed at such an elaborate prank, or belittled...
I don't know whether to be impressed at such an elaborate prank, or belittled...
It's official.
My laptop is broken for good this time, so until I can procure some cash money, this blog might be rather sporadic...
I can still post little things using my phone, though. It's not all bad.
Scans tomorrow. How long has it been? Eight months in remission. The second I start to breathe again I am reminded that my luck could change at any moment. I always try to stifle the excitement.
SO.
I was searching the youtubes for "funny cancer" (because I'm that creative) and came across this video. I was intrigued by this girl so I checked out the rest of her posts. Something about them gives me the willies. As in, unauthentic, cold, vague. You can see her hair follicles! I'm really curious to hear everyone else's opinions, because maybe my painkillers are making me hallucinate:
Your take?? It seriously creeps me out.
I can still post little things using my phone, though. It's not all bad.
Scans tomorrow. How long has it been? Eight months in remission. The second I start to breathe again I am reminded that my luck could change at any moment. I always try to stifle the excitement.
SO.
I was searching the youtubes for "funny cancer" (because I'm that creative) and came across this video. I was intrigued by this girl so I checked out the rest of her posts. Something about them gives me the willies. As in, unauthentic, cold, vague. You can see her hair follicles! I'm really curious to hear everyone else's opinions, because maybe my painkillers are making me hallucinate:
Your take?? It seriously creeps me out.
Friday, 25 December 2009
trannylicious christmas wishes
Merry Christmas all.
My gift to you is this wonderful wig tutorial courtesy of the fashion group on PC.
I knew my doppelganger was out there somewhere.
My gift to you is this wonderful wig tutorial courtesy of the fashion group on PC.
I knew my doppelganger was out there somewhere.
Thursday, 24 December 2009
t'was the day before Christmas...
and not a cancer cell stirring (I hope).
Christmas brings mixed feelings. I love being home for the holidays, but I can't help remembering December of last year; it was the lowest, most despondent, most painful month of my life. And hey!! It's all documented here, just a click away.
Here I am, sitting in the exact same spot on the couch, laptop and all, that I sat for all of those miserable months. I see the big tree on the other side of the window, bare spindle arms still exactly the same. I remember watching the leaves fall and imagining each one a cancer cell, withering, dying, disintegrating into non-existence. Hoping the seasonal cycle of death was happening in my body as well.
It was.
I am so thankful I went through veritable hell and made it back for one more year. A few of my friends didn't, and I feel as though it's my duty to relish every sensation that they've been robbed of. Happiness, gratitude, I feel it in my bones.
Hair update: It's growing in kinky and I can totally comb it into a righteous fro. I've always hated the smell of unwashed hair, you know, the combination of oils and skin and such, but I LOVE it now. I run my fingers through my hair and inhale. Mmmmmm, to be human again. And bangs! observe:
This next bit might be TMI, but then, I suppose that's the point- my little ovary buddies are working again, complete with PMS and cramps and the holy parting of the red sea. Apparently my chemo-induced menopause was temporary. Who knew I'd be so happy to be bloated and irritated?
enough about me...
I want to pass this contest along but I'm too lazy to summarize, so here's the deal:
I love my oncology nurses. I give them a mental hug every time I think of them. Perhaps they deserve more than invisible gestures of gratitude.
Christmas brings mixed feelings. I love being home for the holidays, but I can't help remembering December of last year; it was the lowest, most despondent, most painful month of my life. And hey!! It's all documented here, just a click away.
Here I am, sitting in the exact same spot on the couch, laptop and all, that I sat for all of those miserable months. I see the big tree on the other side of the window, bare spindle arms still exactly the same. I remember watching the leaves fall and imagining each one a cancer cell, withering, dying, disintegrating into non-existence. Hoping the seasonal cycle of death was happening in my body as well.
It was.
I am so thankful I went through veritable hell and made it back for one more year. A few of my friends didn't, and I feel as though it's my duty to relish every sensation that they've been robbed of. Happiness, gratitude, I feel it in my bones.
Hair update: It's growing in kinky and I can totally comb it into a righteous fro. I've always hated the smell of unwashed hair, you know, the combination of oils and skin and such, but I LOVE it now. I run my fingers through my hair and inhale. Mmmmmm, to be human again. And bangs! observe:
This next bit might be TMI, but then, I suppose that's the point- my little ovary buddies are working again, complete with PMS and cramps and the holy parting of the red sea. Apparently my chemo-induced menopause was temporary. Who knew I'd be so happy to be bloated and irritated?
enough about me...
I want to pass this contest along but I'm too lazy to summarize, so here's the deal:
Honor a special oncology nurse for CURE's 2010 Extraordinary Healer Award
for Oncology Nursing
For the fourth year in a row, CURE is giving you a unique opportunity to
honor an oncology nurse through the 2010 Extraordinary Healer Award for
Oncology Nursing! CURE will accept essay nominations from patients,
survivors, caregivers, and peers describing the compassion, expertise, and
helpfulness that a special oncology nurse has exhibited.
Three nurse finalists and the individuals who nominated them by essay, plus
one guest each, will receive round-trip airfare and two-night accommodations
in San Diego, where they will be honored at a reception to be held in
conjunction with the Oncology Nursing Society's 35th Annual Congress, on May
13th, 2010. One nurse will be presented with the 2010 Extraordinary Healer
Award for Oncology Nursing, and will also receive a special gift in
recognition of his or her service to cancer patients and survivors.
The deadline is April 5, 2010.
See http://bit.ly/76xoPg
I love my oncology nurses. I give them a mental hug every time I think of them. Perhaps they deserve more than invisible gestures of gratitude.
Wednesday, 16 December 2009
computer withdrawls
I haven't died.
My laptop's got a broken screen and I've no money to repair it, so I'll have to wait until I can borrow a computer for a real, juicy, satisfying update.
In the meantime, I've been reading Mutants by Armand Marie Leroi, which covers the history of medically documented "mutants" and human genetic variety. There is a chapter on osteosarcoma that is particularly fascinating. Apparently there is a correlation with height, growth hormone, and propensity for rampant bone cell growth. More on that later...
I've been having pain in my left leg and pelvis again, and it feels exactly how it felt 2 years ago, before I was diagnosed. It gets worse at night. It gets worse mid-month. I can practically mark my calendar. My onc says not to worry, but that's what they told me pre dx, too. I really, really, really think it has something to do with my hormones. Every doctor I've ever spoken to assumes I'm wrong, and yet no one can give me an explanation.
Maintaining a "normal" "successful" quality of life with disease is effing near impossible. I feel exhausted and broken-down every night, the consequence of trying to make it work. har har.
more later my lovelies.
My laptop's got a broken screen and I've no money to repair it, so I'll have to wait until I can borrow a computer for a real, juicy, satisfying update.
In the meantime, I've been reading Mutants by Armand Marie Leroi, which covers the history of medically documented "mutants" and human genetic variety. There is a chapter on osteosarcoma that is particularly fascinating. Apparently there is a correlation with height, growth hormone, and propensity for rampant bone cell growth. More on that later...
I've been having pain in my left leg and pelvis again, and it feels exactly how it felt 2 years ago, before I was diagnosed. It gets worse at night. It gets worse mid-month. I can practically mark my calendar. My onc says not to worry, but that's what they told me pre dx, too. I really, really, really think it has something to do with my hormones. Every doctor I've ever spoken to assumes I'm wrong, and yet no one can give me an explanation.
Maintaining a "normal" "successful" quality of life with disease is effing near impossible. I feel exhausted and broken-down every night, the consequence of trying to make it work. har har.
more later my lovelies.
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