I hope your Christmas was as fulfilling as mine in 1989!!
Friday, December 24, 2010
Chronic pain. The thing that follows after cancer, but no one seems to talk about. The thing that plagues my everyday life, but doctors can't seem to figure out. Chronic pain is eating up my life.
Now, everyone's physiology and background is different. I only speak for myself. I'm sure there are miraculous people out there that go through chemo, surgery, and radiation relatively unscathed and untouched. Cancer treatment lite, I like to call it. If you fall into this category-- lucky duck-- just scroll on down. If not, let's share our experiences with chronic pain instead of masking them, as young adults tend to do in an effort to be "normal" within their peer group. Perhaps the more dialogue is opened, the more physicians and loved ones will be able to understand and help us.
My chronic pain seems to be twofold:
I have deep somatic pain due to scar tissue in my hip, where the tumor was, and right clavicle/shoulder, where lymph nodes were plucked during the Thyca surgery. This pain is dull, aching, and absolutely unrelenting. This is my main issue and the thing that compromises my quality of life the most. When untreated by opiates, as it is now, this pain consumes me-- I can't focus on anything else. I avoid physical activity completely. It just does not let up. It's maddening, I tell you.
[Scar tissue from radiation has also caused a myriad of problems for my digestive system and bladder... but that's another painful story for another painful day]
I also have neuropathic pain all over my body, though mostly felt in my joints, presumably from 8 months of chemo toxins damaging the protective sheaths around my nerves. This pain feels sharp, stabbing, and sometimes tingly. It's rather unpredictable-- I get sparks of pain everywhere from my chin to my toes. I also experience neuropathic pain around my neck incision, where nerves have been cut & damaged. The skin there is numb to the touch, but even gentle pressure creates a sharp pain.
To combat all of this I use daily opiates, light stretching, medical marijuana, and hot baths. The opiates, obviously, are the only thing I've found that allow me to live a semi-normal, semi-pain-free existence. Unfortunately, these have all sorts of drawbacks, including increased dependency, side effects (I hate the grogginess), and nasty withdrawl symptoms. Plus, they're pricey. You need insurance. You need employment. You need a functional body to stay employed. You need opiates. Etcetera.
Until now, I had no idea just how much I rely on those little orange pills to function.
Do you have chronic pain, even years after treatment? How do your doctors respond to your concerns? Have you found anything that particulary works for you?
Sunday, December 12, 2010
Really Susan G Komen foundation? No need to go all diva on us.
Susan G Komen Foundation elbows out charities over use of the word "cure"
"Cupcakes for the countermeasure" just wouldn't fit on the banner. jerks.
"In addition to raising millions of dollars a year for breast cancer research, fundraising giant Susan G. Komen for the Cure has a lesser-known mission that eats up donor funds: patrolling the waters for other charities and events around the country that use any variation of "for the cure" in their names.
So far, Komen has identified and filed legal trademark oppositions against more than a hundred of these Mom and Pop charities, including Kites for a Cure, Par for The Cure, Surfing for a Cure and Cupcakes for a Cure--and many of the organizations are too small and underfunded to hold their ground..."
Friday, December 3, 2010
Long-time followers will remember a post I did in 2008 upon inception of this idea, inspired by the irreverent fighting spirit of comic heroines like Tank Girl.
I want this comic to be an amalgamation of amazing, engaging artwork, hilarious storylines, and honest, informative commentary on the YA cancer experience. There will be writing from this blog, and other guest contributors. I want patients to be able to read it while going through chemo, and be transported into a fantastic world of kick-assery and (in our own sly way) hope.
I want to be able to give this work of art for FREE to any cancer patient/survivor that would like it.
Please help me spread the word! Let's make this happen!!
If you want to contribute/want one sent to you, email me: kaylinmarie[at]gmail.com
Wednesday, December 1, 2010
I ran across a great in-depth study on YA oncology, found here. Of particular interest is the paragraph on psychosocial effects of cancer on those only just entering the arena of adulthood:
"Perhaps the greatest difference between patients in the adolescent/early adulthood age range and other ages is in supportive care, particularly psychosocial care. Adolescents and young adults have special needs that are unique, broader in scope, and often more intense than those at any other time in life. Cancer therapy causes practical problems in social arenas. The dependence of adolescent and young adult patients on peer-group approval poses greater challenges when confronted with a diagnosis of cancer. Self-image, a critical determinant during this phase of life, is compromised by many of the adverse effects of therapy, such as alopecia, weight gain or loss, mucositis and dermatitis (acne, mouth sores), bleeding, infection and contagiousness, susceptibility to infection and need for isolation, impaired sexuality (intimacy, impotency, tetratogenicity risk), and mutilating surgery. Other challenges include the loss of time from school, work, and community and the financial hardships that occur at an age when economic independence from family is an objective. A wide range of financial challenges occurs in the age group. In addition to the health insurance challenge described above, there are the usual limitations in affording life, much more once confounded by the costs of cancer treatment. There may be guilt if not attending to these responsibilities or stress and fatigue if trying to keep up a semblance of normal activity. Partner relationships are tested by the strain of the cancer diagnosis and its therapy. Whether a partner stays in the relationship is challenged by fear of relapse or infertility and may be influenced unduly in either direction by guilt or sympathy. Those contemplating having children may fear passing on a genetic predisposition to cancer. Medical professionals are often poorly equipped to deal with the psychosocial challenges within the age group and are often stymied by the need in these patients to increase compliance, reduce stress, and improve the quality of life during cancer therapy."
Friday, November 26, 2010
I've had three heartbreaking things happen in a short span of a week- all sandwiched between one magical trip to the Big(ish) Apple.
These three things have uprooted me emotionally, monetarily, permanently.
All three have been the decision of other people, directly impacting my life.
No wonder I feel helpless.
My life has been rather desperately reaching for something to cling to, for some small root to grab and take hold and secure me to more stable ground. The ground I cling to is far more fragile than myself- often just a future hope, a sliver of opportunity, a speck of a man. Perhaps all only ideals. Easily crumbled.
[In NY; a crooked bowtie means good times]
So, this Thanksgiving, which I almost missed--
I am thankful for the friends and family that remain steadfast- offering a hand when my ground is giving way, pulling me up from the rubble, time and time again. I'm thankful for the people who stay with me, through all of my misgivings and flaws, because of love. I fucking love you too, honestly, absolutely.
ok. No more bad luck, on the count of three...
Tuesday, November 23, 2010
Wednesday, November 17, 2010
I spent all my NY savings on rent after my 2nd diagnosis.
I applied for a SAMFund grant in September, naively thinking that they could help me with my goal of moving to NY.
I just got an email today saying that I have been rejected, because at the time I was writing my application essay, I hadn't finished treatment (this was during the RAI). So, even though I'm finished, I am disqualified.
I'm on the train and I can't contain my tears.
I really was hoping.
EDIT: this piece of wisdom has been bestowed upon me by the lovely Bekah:
FUCK Samfund. I've applied for the same grants, and they claim to reject me because I'll 'never be finished with treatment.' Since mine is chronic, it will come and go..
We create our own world with our minds -- you know this. Yes, you are allowed to be down and out, you are allowed to feel like the world will cave in. Life hits us fucking hard, but we MUST get back up.
Cry, throw things, get pissed. And then, shake it off. The world is still yours if you want it.
(I needed that.) And for the record-- New York was awesome; the people friendly, the food delicious, and the subways didn't smell (much) like pee. I'll get there despite everything.
Thursday, November 11, 2010
It seems like everything was going so well before cancer #2. Graduation, a finished portfolio, Hawaii trip, preparations for the move to NY. Fuck yeah, I made it through cancer and now I will take on the world and make the life I've always wanted.
Now? Now I'm broke, scarred, and still here. I still have cancer. I'm stuck. I've lost momentum. I feel like a puny inert lump in space-time just waiting to die. Waiting out the days. Wondering if I'll be able to pay the bills. But mostly just waiting.
I really don't know how to continue life knowing I have cancer, just lurking around inside of me, waiting for the next chance to pop up and reclaim my body.
I have no answers right now.
I do, however, have super-kawaii cancer gifs
Monday, November 8, 2010
Tuesday, November 2, 2010
All of this free time is exacerbating things, I think. I have way too much time to THINK, but not enough energy to DO.
I keep waiting for some kind of salvation-- an SSI claim approval, or the samfund grant, or a job interview. Something to signal that my life has hope, a direction, and isn't totally going to shit because of cancer.
I keep waiting.
Tuesday, October 19, 2010
Despite having a total thyroidectomy, lateral neck dissection, and radioactive iodine, thyroid cancer is still partying it up in my chest cavity. Awesome! We's friends fo' life.
LUCKILY, papillary thyroid carcinoma grows very slowly, so it isn't an immediate threat to my health. I'll probably have to have RAI again in a few months.
I can live with this, it's cool. It's not Ewings. My problem is... the extent to which my illness is affecting my 20-something life. It's fucking shit up. I should be half-way to being the next Anna Dello Russo now but I'm stuck in bed in my tiny rented room in SF DOING NOTHING. At least, that's how it feels.
In reality, I am doing everything I can. I am taking supplements, probiotics, eating well, stretching, studying my industry, trying to keep up.
My problem is that I want too much. My dreams have always been massive. I've been brought up with the notion that if you want something, work hard and you shall receive. It's a nice idea but it's ultimately bullshit. So much depends on random circumstance.
Will I ever be able to set cancer aside and continue with my passion, my work, my life?
fuck if I know.
I hope so.
Tuesday, October 12, 2010
I love the women in my life. I keep them close!
cigar boxes: grandma's old
cancer teeth: made by rachel
1970's nudie box: made by mandalee and robyn
roses: from wray
medicinal marijuana: my own
Thanks everyone for the sentiments, if I haven't gotten back to you, I will soon!
Had a scan yesterday, and will have another next Monday. Hopefully everything is going as planned and I shall be declared cancer-free (again).
On another important woman in my life:
A new Ted Hughes poem about Sylvia has surfaced...
Monday, October 4, 2010
Wednesday, September 29, 2010
In a few hours I go in to take my radioactive pill. I'll be quarentined for 48 hours.
I've been extremely hypo-thyroid since the surgery but have only felt its effects within the last week or so. At this point, it's a battle just to get my ass up to take a shower.
fatigue, random depression, foggy brain. thinking only in pieces, which are promptly forgotten anyways. can't really write or read. i wonder if this is what the onset of dementia feels like.
oh, and I CAN'T BURP. It is sooo painful, to the point that I don't even eat unless I have to. Built up gas that can't escape, constantly throughout the day, constant nausea.
all of this feels familiar.
hang in there, it'll be all better soon.
Tuesday, September 21, 2010
My doctors hope so.
The ubiquitous Prozac pill- do you recognise it? I have graduated from the green-and-white 20mg to the more formidable orange-and-blue 40mg. I like the new color; it reminds me of Karl's s/s 2007 pill dresses for Chanel. No doubt he designed the collection with "afflicted" society darlings in mind, but it would be equally fitting for any cancer-afflicted fashionista.
(feel free to gift this charm bracelet to me any time ^_^)
My history with antidepressants is a long one- I started having intense bouts of depression in my late teens/early 20's, presumably when hormones kicked in with a steel toe and sent my body and mind awry. I call these bouts "The Black Hole"-- it is exactly what it sounds like-- being sucked into an enormous vacuous hole of anxiety and self-worthlessness, drowning in it, feeling the weight of entire universes collapsing on top of you... the usual. Whilst in the hole I lose all of the grounding perspective I'd normally have in day-to-day life. I want to die at that moment, things are so painful. I'm well aware that it's all in my head. Over time I've learned to bear it, let it run its course like a fever, and in a few days I am usually feeling better.
These little pills are my daily bread. They help patch up the holes.
Friday, September 17, 2010
Of course I took it for granted; it wasn't even there until I hit age 23. Now... I wake up feeling like something has hit me, an invisible moving vehicle that I happened to step in front of. The accident can't be reversed, no matter how tightly I shut my eyes and reminisce about past-me.
The only time I don't feel pain is while sleeping. This is ironic, because I have chronic nightmares- every night is an increasingly ultra-violent scenario, usually involving me being captive and trying to outrun my captors, and of course, a tortured death. The end is usually grim-- I am on the ground about to have my skull kicked in, or I am shrouded and noosed and pushed off of a parking high-rise. I mean, seriously, seriously grim. But I feel no pain, and right before the final blow, I awake.
I wake up safe and warm in my bed, in pain.
I honestly can't decide which state I prefer, awake or dreaming?
what would you prefer?
Wednesday, September 8, 2010
1. I have papillary thyroid cancer that has spread to most of the lymph nodes on my neck.
2. Said nodes have been scraped out, along with my thyroid, parathyroid glands, and a bit of my trachea, which shows cancer involvement.
3. In 3 weeks or so, I will receive radioactive iodine treatment to take care of any cancer cells the surgeon left behind. My pee will glow in the dark. I will be dangerously radioactive. If you touch my skin, yours will burn. Seriously!
4. I am definitely staying here for awhile. I need to be monitored closely.
The surgery was supposed to be 3 hours but turned into a 9 hour affair due to the many surprises my neck provided. When I awoke and saw that it was 1:45 am, I was convinced the clocks were broken. Nope. Just me.
Recovery has been painful, but I am now able to eat soft foods and turn my head slightly. I have been taking advantage of this and eating heaps of ice cream. Here's a picture during my hospital stay, with the drains still in:
haaah, wait, here it is:
and here is a picture of how it's healing:
One of the first things I noticed about the incision was how beautiful and even my surgeon's stitches were- seamstresses would call this a blanket stitch. In this photo I'm still very swollen and unable to turn my neck or sleep on my side. lameness. Literally!
Sunday, August 29, 2010
This time it is papillary thyroid carcinoma- I have surgery scheduled for this Thursday. They'll be taking out the whole gland, plus any lymph nodes that are involved. We shall go from there.
The diagnosis comes just weeks before my intended move to New York. All plans are put on hold. I'll need to stay in California for close monitoring. There go my dreams again, off to the dump. Perhaps I'll get to reclaim them later, little lost treasures, just like last time.
It is almost two years- to the day- of my Ewing's dx in 2008.
Why are my cells so goddamn uppity?
It started with a cyst. A lump on my neck, right above the clavicle, about the size of a walnut. I thought it was a swollen lymph node. Upon biopsy it was revealed that the lump is mostly old blood from cappillaries in the thyroid gland, mixed with pus and lymph fluid- my body's futile attempt at fighting back.
So here we are, a lump, a second cancer, a postponing of life once again.
As celebration, or distraction, D and I went to the carnivorous plant nursery in Sebastapol.
deadly beautiful things.
Thursday, August 12, 2010
Friday, July 23, 2010
Wednesday, July 14, 2010
It's been almost two years since dear old Ewing's entered my life. I have lost a lot of brothers (I say this because, for some reason, only my male cancer friends have died), and I have grown immeasurably, to the point that I don't even recognise the pre-cancer Kaylin. Now, having graduated college and thus far avoided recurrence, I have a chance to start fresh. Completely anew. I can move away from the dimly lit Kaiser infusion rooms, the memory of suffering, the old ties and past faults, onto a life (dare I say) without cancer.
A friend sent me an email a few months back, asking for advice. She had prepared herself for death, was comfortable with its immanence, had presumably tied up all of those loose ends within one's self. And then, a second chance, balloons and bouquets, be off on your merry healthy way! What. the. fuck. do. i. do. now?
The transition between death and the "second life" we've been given is massively confusing and distressing, almost as much as the task of readying oneself for death. I didn't really have an answer for her. I am only just dealing with this now. I had my senior year to focus on, and I dove into my work with a calculated frenzy, well aware that I was using school as a distraction.
Now, school is done, forever, and I have the task of rebuilding all of those hopes and dreams that I abandoned when I was bracing myself for a premature death. I really, really thought it would come back. Maybe it will. But... I've resolved to go on living as if it won't.
So, a cross-country move is in order. I'll be moving to New York by the end of summer, and hopefully secure an Assistant Designer position. Exciting times! I crave a stable job and routine after the insanity of the past few years. Here's hoping.
Here are a few pictures of a recent Hawaii trip, courtesy of my bf's mum. It was one of the happiest times of my life. I learned how to surf... something I've always wanted to do. Yes, my hip hurt, but it felt so nice to USE my body, to be active again. No pain, no gain. That's the understatement of the year.
Wednesday, June 30, 2010
Saturday, May 15, 2010
I've finally graduated with my BFA in Fashion Design and participated in the senior show this past May 7th. None of this means much out of context, but I am proud. I'm proud that I didn't let cancer fuck up my plans all that much. Now I have no plans, nor do I want to make any- I just want to keep expelling ideas and art until I croak. I'll float on and go where I go.
I am leaving this here for you.
Now that I'm looking for a real job I can't be as candid as I would like. People Google. Not everyone appreciates the hilarity of a deadly disease. I have to sensor myself. If you enjoy my writing please friend me on Livejournal at [girl_sets_fire]. On lj I can muse about weirdness, inspiration, the struggle with depression, SI, and cancer after-affects without worry of exploitation or being "found out".
This is not a goodbye.
Someone asked who the artist of "Vanitas" was, a couple posts down... his name is Fernando Vicente.
Here are some figure studies for his paintings:
Sunday, May 2, 2010
"...for teenagers and young adults like her, the prospects for survival had barely budged..."
This link is MIA but if you search for the file "InTheirPrimeandDying.pdf" you'll be able to read it in google reader.
Wednesday, April 28, 2010
Our stories are eerily similar. I wish I could have talked to her. The cancer struggle often goes on for years, on and off, and you've no choice but take it all in stride...
Here's her wiki:
Here's her blog:
On a lighter note, here are a few preliminary shots from my thesis collection:
It's a dress with a tumor; how cancer-centric can I get??
I've decided that if my yearly scan is clear, I'm going to retire this blog for the time being. It is what I wanted it to be- a candid documentation of cancer treatment. It's over now, and I doubt anyone wants to hear about my chronic pain every few weeks.
That said, I won't be a stranger ;)
and if it's back... well, I'll get to take you on a whole new adventure.
Tuesday, April 20, 2010
Yearly scans May 10th
Graduation show May 7th
Deadline for my senior collection garments: this Friday.
I have been working SO HARD. A whirlwind of work. Stitching still my eyes burn and my fingers bleed (literally!). I pulled an all-nighter, which is requisite college behavior, no? I was able to work through the night but my body retaliated soon after: fever and sweats, a debilitating migraine, and vomiting/heaving for the subsequent weekend. I'm still learning my body's limits, even a year after the fact.
Remember when I was bald? I don't. I can't even recognize myself, it's like I was in utero...
Thursday, March 25, 2010
I realize it will take several years to be put into effect, but I'm so happy this passed in congress. Sharing is caring, even if it's our hard-earned money. Healthcare should NOT be big business, in my opinion.
Here are a couple of links, spelling out the pros and cons in a simple and succinct way:
Pros and Cons of the healthcare reform proposal
5 key things to remember about healthcare reform
Monday, March 15, 2010
I've been having a tough time keeping up with life. This is a hard thing for a perfectionist to handle. Harder, harder, work harder to be normal. You must hide your physical pain, you've got to fight off your anxiety, you need to combat fatigue. Take your pills.
My collection due date is in exactly one month and one week.
work work work
My friend is dying slowly, but much faster than me. This is terrifying; to have a window into what will probably (50%) be your own unwanted fate. A flip of the coin. Every moment my mind is left to wonder, it wonders about death.
It crosses my mind frequently that this collection may be the last I ever design. So it's got to be good. It's got to be. perfect.
Anais Nin once wrote, "I postpone death by living, by suffering, by error, by risking, by giving, by losing".
I postpone death.
Wednesday, March 10, 2010
Sunday, March 7, 2010
Wednesday, March 3, 2010
This quote is from one of my favorite books, Letters to a young Poet. I had it on my wall while I was going through chemo. Don't be scared, rather, appreciate the unknown.
“Have patience with everything that remains unsolved in your heart. Try to love the questions themselves. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day.” -Rilke
Thursday, February 18, 2010
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
Thursday, January 21, 2010
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, January 5, 2010
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.
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.