heart bones

In my last post I wrote about a close friend and the unfortunate intricacies of human emotion. We must all be allowed to mourn-- to rob someone of that right is selfish and inhumane. My reason for finally opening up about this deep wound I've been concealing is as follows: this is a confessional blog about young adults with cancer, and this is something we all go through yet never share. I've watched many of my brilliant friends die unfair, painful deaths at a young age, and I know I await a similar fate. Each person/family deals with trauma in an entirely different way. Some need you more, and you feel guilty for not being able to be there enough. Some push you away out of misplaced anger, or due to a coping mechanism, or simply to conserve energy. With such a delicate and confusing subject, you try to take cues and read between the lines-- you try to do what's best for your loved ones. Sometimes you get it wrong, sometimes you never know. Sometimes there is no closure, or their family denies you closure. The key is communication and empathy: the feelings involved in end-of-life decisions are never easy, and all of them are ok. We must be mindful that everyone mourns in their own way. Even anger and irrationality play a part in the mourning process. However-- it is not ok to deny someone the right to love, mourn and find the closure they need. Don't let anyone bully you into thinking you've no right to mourn: it is their own irrational & misplaced anger, not any fault of yours.

Throughout the past 8 years I've realized that there are so many variations to how the story ends. And also that it never really ends. Through the blur of pain we must keep our focus on love. I feel sorry for the people that succumb to anger (especially the ones that endeavor to cause others pain just to relieve a bit of their own) but I will love them just the same. We're all in this together.




--------


Chemo update: I'm on my 5th cycle of 12. It is the hardest thing I've ever had to do-- go through this intensive chemo alone and still manage to take care of myself. As the years go by, the more chemo I take, the more my body just disintegrates from the inside out. Every new relapse is harder than the last. I need a blood transfusion after every cycle. I'm too weak to get out of bed most days. I've fallen behind with friends, keeping up relationships is impossible-- I think of them daily but don't have the energy to visit or even converse. I sleep a lot. As always, I'm just trying to get through it and praying for another remission.

Usually the last 2 days before I start another cycle are my best, which means I have 4 days a month wherein I'm feeling ok. ish. Let me tell you-- I'm trying to make the most out of those 4 days. I recently took a trip to Washington D.C. to see the National Gallery, Smithsonian collection, and pandas (!!!)... life-long dream realized! I've also resumed work on an art project involving the journey to healing and death that I'd put on hold, ironically, after my relapse in July-- I'll be having a show in June, stay tuned.



Tian Tian!


I know my posts are as rare as my bowel movements as I go through treatment-- follow me @kaylinandres on Instagram for slightly more regularity.

May: cancerversaries, birthdays, and NPR shits & giggles.

May is both the anniversary of my release from the Abu-Graib of all cancer treatments, and my birthday-- the one where I turn 27 and lose the health insurance I had through my mom. It's a complicated month.

Here's the post from my last chemo, May 2009

I've been thinking a lot about after-care. It's been two years since my last cancer remission, and I'm only just beginning to see a therapist to unload all of this emotional baggage I've been carrying around. It's hard to get [free] help from resources like cancercare.org and SamFund because there's so much red-tape & many, many exclusions.

I am of the opinion that everyone should stop mindlessly running, walking, and buying for Cancer Non-profit Monoliths who have lost their way... who have minimal outreach services compared to the millions they make as a non-profit organization. They profit from our collective guilt and ambivalence. What we should be doing is investing in finding a less invasive, less brutal way to cure cancer, and providing palliative services for the millions of young adults dealing with the aftermath, as well as studying the long term effects.


As of now I don't have health insurance, and that's really scary. I should have never gone to art school. I've racked up a few medical bills so far, which of course I can't afford to pay and so they go to collections, where they will languish until I either die or become filthy rich. Thank god for HHC and Planned Parenthood!

Despite everything I had a very nice 27th birthday. We went to Coney Island for the first time, rode rollercoasters til we were dizzy, ate icecream, and saw a guy wearing a shirt that said "SIT ON MY FACE AND I'LL GUESS YOUR WEIGHT". All in all an enchanting evening.

blending in 

I was on NPR's The Takeaway this morning talking about the comic, and I was so focused on trying not to use "fucking" as an adjective, as I am wont to do, that I said "shitting" instead. I also completely forgot what I was talking about several times & totally derailed. 7:45am is a fucking ungodly hour to be articulate. I refuse to listen to it, but you can find it here. Don't judge me dudes.

I laugh everytime I think about Celeste's face as I mention how funny vomit and shit can be.

chronically chillin'

It's so exciting to see the amount of support that our comic project is getting! A BIG THANKS to everyone that has become a backer so far. Every time I see a new donation in my inbox I jump for joy. Someone even donated in palindrome! mmm symmetry. 

Today I want to talk about chronic pain (again, forever, we are always together).  I don't think people talk about it enough, considering how drastically pain can effect daily life. Are young adults too embarrassed? I am. I've always been the independent perfectionist personality type, so admitting to people that I can't handle the physicality needed to do something is always heartbreaking. Often I don't admit my pain and trudge on-- a decision I sorely regret the next day.

Currently I have a friend staying with me that wants to go on all of the amazing tourist excursions one takes while visiting NY-- and I fear I just don't have the energy.

Chronic pain steals your energy and holds it hostage. You've got to ration. If my friend wants to go to the MET & Natural History Museum, (which I'd love to see, btw) I have to plan my energy/pain needs for the day. I have to rest the whole day before, and whole day after.  I can't just decide that morning that I'm going to go. It's hard to explain to "normal" people, because I used to be "normal" and I miss the freedom it implies, even though most people take it for granted.

Imagine feeling exhausted 24/7 from the drugs you take to manage your pain, which is also present 24/7. Now imagine doing everything you do in normal life-- walking to get groceries, working overtime, entertaining friends, cleaning the bathroom, cleaning yourself. Chronic pain turns all of these menial tasks into colossal events that must be planned for. And I really, really dislike planning!

Awhile back I found a superb explanation of this dilemma from a woman living with lupus. You can easily substitute lupus for cancer or chronic pain in her example. If you are struggling to understand the needs of anyone living with chronic illness, especially young adults, I highly recommend reading this "spoon" analogy, cheesy as it might be. Here is an excerpt:

"It's hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing [sic] a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”."

My point is that I don't have enough spoons to go to the MET today, even though I would like to. It's impossible to understand living with chronic pain if you haven't before-- but it's important to try to understand those who do, and take it into consideration when you're with them. Not in a verbose sickly-sympathetic way, but just... keep them in mind. Us chronic pain sufferers are REALLY good at hiding it.

For that Badass, Becca Babcock.

Last month I was perusing the blogs that I follow, and I was sad to realize that our Becca is gone. I say "our Becca" because she was a vocal (and super-awesome) young adult cancer blogger, who shared her journey and followed along as we shared ours. She was part of our collective voice, and she will always be, thanks to her writing.  I am extremely touched that her mother continues to post her journal entries, so that we may benefit from Becca's private insight. I have years and years of journal entries just like Becca's, and I would hope that my mom would do the same. I think our shared goal is always: I want to be of benefit. I want my life to mean something to someone.  I think that by sharing our deepest fears and pains, we can accomplish this in an especially intimate way.

I met the fiercely intelligent Becca in 2008 through Planet Cancer. She commented occasionally on this blog and she always had good advice. I guess it was as if she'd done 5 successive tours of duty-- she'd been at war for awhile, and she knew the ropes. We all exchange battle stories, but in the end it seems we still feel hopelessly alone. We fight alone. Nevertheless, there are things that Becca wrote, privately, that make me feel not-so-alone:

"You know what one of the most awful parts of cancer is? Knowledge.Of course, that is an odd statement, because at first I would be inclined to say that is one of the gifts of cancer. When trying to appease myself somehow with the thought of cancer and all that it entails, I would find a very small amount of comfort in certain knowledge that comes with diagnosis.That knowledge includes things such as: I KNOW the true meaning of the phrase 'Life is Short'."

[I often feel that I "know too much" for my own mental health, due to what cancer has taught me.]

"I think often how I don't think I'll be alive very long. not like I think I may keel over, say, tomorrow. but unless a miracle happens very very soon, I feel inevitably, I'll be defeated :(  (incidentally, it's now tomorrow & I didn't keel over...). I sometimes wonder why i can't just get it easy & fall asleep one night & just not wake up? I wonder if people that has happened to, if they could ever appreciate how lucky they are to have that happen. they not only have no idea that's coming, they don't have to spend time agonizing over unfinished business... they don't have to worry about the pain and suffering associated with a sudden violent death. I really envy those people. Anywho, I'm kinda just weary on life today. I can't wrap my mind around my life at this time. I don't seem able to find motivation in order to "care" about things. & in general...I'm just tired of people. normal people. they bother me without even trying or attempting to. oh, that, and it's back to cold.  BAH."

[link to Becca's amazingly articulate, literally bad-ass blog here]


I want to dedicate my life, somehow, to young adults with cancer-- there is nothing else I feel passionate about anymore. I've spent the last few months in an incredibly deep depression. It has been difficult coming to terms with life in the afterglow of cancer. It has left an indelible mark of uncertainty and finality upon my life. It has left physical and mental pain that has yet to resolve, and at times is overwhelming. I am still searching for a life after cancer. Turns out it doesn't just come to you naturally, like breathing, as one would expect. You really have to fight for stability and your own ideal future. You have to come to terms with the knowledge you've been given-- that pain endures, and death is imminently unknown, and therefore life is precious and bullshit is insufferable. Right now, that's what I'm working on. If I can get past those things, and stay healthy, I'll be golden.

I am unsure what role I will play in cancer advocacy, but I'd like it to be an ongoing goal. For now, Jon and I are continuing with our Cancer Comic. If things go as planned, we should have the entire graphic novel finished by September, just in time for the MTV documentary to air. We are adding some of my personal writing to the final publication, and I've been thinking about opening up a submissions process to allow fellow cancer writers and artists to be published. Thoughts? Anyone interested in submitting an essay or illustration to Terminally Illin? I feel that it could have a monumental effect on the future cancer community if it became a communal, collective effort... but I'm unsure of how to facilitate this.

I am also planning on being much more active here on CIH, because I've realized that my writing continues to positively effect people's lives. I want to say that I appreciate immensely the feedback that my readers give-- there are many visitors largely unknown to me that have been following my story for years, probably out of morbid curiosity, but also out of compassion and a genuine appreciation for human expression. People like me, people like Becca. People like you. Let's keep sharing, no matter what.

live fully or surrender

I'm feeling really down today.

I went to visit an old school friend this afternoon at his studio, which was great; I forgot how much we had in common and I've always admired his knowledge of proper clothing construction. He is the professional I wish I was. So we were catching up, and of course it was requisite that I talk about my cancers. I explained the neck surgery, the chronic pain, my medication regimen, how I really want to find a job that offers health insurance. The documentary, and how I hope it will somehow help others. All with a casual insouciance that no doubt disturbs people who don't know me well. I may as well have been talking about a paper-cut.

But under all of those flat recitations there was a tightening of my chest, my eyes started to water, I felt a pain bubbling up within myself that was definitely NOT the Thai curry I was eating. Here's the comment that did it, and if you are a cancer survivor you've heard it countless times: "Wow, you're so strong! You're such a badass! Most people can't even handle normal life stress, let alone cancer". I know, I know. Believe me, I didn't choose to be a badass, it just happened.

I always think to myself, "If you had cancer you'd have done the exact same thing", but I never say it because people unanimously reject that statement. "Oh no, I don't know what I'd do!" Let me tell you: you'd do what you need to survive, you'd bear your pain and try your best, no matter how ugly and messy it gets. Everyone has to do it at some point. Cest la vie, and shit.

I'm not a badass, I've just had some bad luck. And this is why I'm feeling down today.

I don't want any more back luck for awhile. A central struggle for me since moving here has been the fear of cancer returning, just as I've made the life-changing decision to continue on with my career aspirations. I have hip pain, I fear an Ewing's recurrence. I have ongoing digestion troubles, I fear colon cancer. After you have two primary cancers, nothing is improbable. The rain-cloud looms incessantly overhead. Sometimes it chokes me.

I am afraid only because I am happy, because I have something to lose now, and to be cancer-free seems too good to be true. My instinct is to refrain from savoring the freedom and happiness I feel due to a sinking feeling, deep inside, that I must prepare myself for the next big storm. It's a struggle to get past this.

I will close with this, from fellow cancer blogger Cara/growthandtransition, whom I've been following lately and admire greatly for her openness:

"This tiny bird reminds me, still, that Courage has a face - it doesn’t come in feats of strength, but in fear and longing, in pain... I’ve come to the conclusion that we need not differentiate circumstance, only response. One person’s measly splinter may be another’s downfall. Regardless of experience or level of pain, everyone must make a choice to live fully or surrender."

(full entry here, check her out.)

blogaphobia

When ever I haven't blogged for awhile I get anxious, thinking I have to blog, enduring a massive writer's block and forgetting all of the things I wanted to say in the first place.

meh.

I've taken a few weeks month off to attend to personal issues, i.e., the rearranging of my life. I've made some progress. I am short one life-partner at the moment, which saddens me. To stuff the pain I've also been purchasing an unfortunate amount of socks from this store.

Our project has been funded and we're delving deep into the world of comic book production, from learning spacial layouts, to composing an epic story with a slight (hopefully not too cliché) nod to the hero's journey. As we come up with new ideas, the story keeps getting richer, more coherent, more inherently awesome. I really can't wait to see it in its final form.

In addition, I'm designing a small capsule collection of metal free dresses & separates to go with the printed scarves that we offered our backers. These pieces are meant to be an alternative to the lowly hospital gown, but beautiful enough for a night out. We plan to launch the collection and comic together. Ok, enough gushing!

Here are a few photos of my sketchbook and our project board:

Health-wise, I've been having the same problems-- scar tissue/nerve pain, GI issues such as vomiting, cramps, weird BMs, depression, and many side effects from the methadone, which consequently makes everything else worse, I suspect. Side effect I hate most from methadone: sweaty palms!

I'm still on the hunt for a pain regimen that works.

Had a lung scan last week and I'll see an oncologist about it on Wednesday.


That's about it for now. très intéressant, I know.

I SWEAR I'll start making this blog less depressing.

eventually.

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."

dude, seriously.

Lesson #1: There is no seperation between life and death.

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

<3

My PTSD has been flaring up lately. I haven't left my room in days. It's like a wet blanket wrapping around you, blocking you from reality, suffocating you. Fear, anger, guilt. hopelessness. Sometimes I actually taste the chemo under my tongue, or feel sharp pains by my port, as if a needle is sticking me.

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.

is this my daily dose of happiness?

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.

After-cancer is hilarious

When the joke is over, and the applause have ceased, when does one... carry on? When do I let go?

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.

My birthday is in a few weeks... no, not my legal birthday, but the day I went from living dead to just plain living again. May 1st was my last day of chemo. It's the day I got out of prison... I can't believe it's been a whole year. It feels like just a few months have passed.

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...

life is a struggle, right?

A brief update: I am currently working on my senior thesis collection for fashion design; a culmination of my college work and personal artistry. It is exciting and rewarding and STRESSFUL AS HELL.

Normal stress after cancer is proving to be an uphill battle. In my pre-cancer days, I'd stay up for days and a time, drink gallons of caffeine, and kick out a project that I could be (reasonably) proud of. My body would recoup in a few days and I'd be fine.

Now, things are drastically different. I am managing my time well and have allowed time for rest, but my body is screaming at me. I like working with a deadline, but I worry that my body won't be able to keep up with the demands I'm putting it through. 10 hours a day, every day, I've been draping, pattern drafting, sewing, drawing, crying in the shower with my clothes on, all with wide-eyed anticipation for May.

After a few days at work my muscles are burning. Everything aches, from my back to the tips of my fingers. I've had a cold that's been waxing and waning for 3 months now. My PTSD symptoms are out with full force, presumably due to all of this stress. I am not complaining, I'm merely documenting my experience. I understand that cancer, PTSD, stress, and the general "failing" of my body won't go away, and I'll need to cope and adapt. That said, I am the happiest I've ever been in a long, long time. Or perhaps, just more appreciative of happiness... :)

Here is a really great, accessible essay on PTSD. I relate to just about everything that is written.

Here's a sneak peak at one of the muslins I've been working on:



So basically, in a nutshell, I'm stressed and in pain and it sucks, but I'm trying to work it out. [Not "make it work", I swear, the next person who says that to me gets a pressing block to the head.]

apres moi le deluge

It's so easy to forget you had a life-threatening illness once you're better. Yes, I talk about cancer, but I am often detached from the subject. It has become foreign to me again.

I haven't slept a wink for days.

I'd been working on a school project like I always used to do, all night long, when suddenly cancer slapped me upside the face and I realized it's been 5 months since the end of chemo. Five months and I'm relatively normal again. Friends, school, design, work. All of this could come crashing down again any day now. Maybe I am just anxious for my scans this month?

I haven't slept a wink for days.

I've been trying to write about treatment in hopes of some sort of catharsis. It's a memory and a place to which I never want to return. Below is a bit of it. That's what cancer is like. Seriously. Exactly that.

Remember lying amidst the savage darkness, the hollow sound of idleness, waiting to either die or live, but only waiting. Wishing fate had a backbone. The feeling of your body plotting against you, wanting to reach in and exhume your disease, to tear apart tendons and scrape the bone clean. Oh, to be clean. Fevers like little deaths, dying only to be painfully reborn again by sunrise, watching that glowing orange eye rise and wink, upon which you realize the world must be mocking you. You'd rather end than watch the cruel parody of daybreak again. the sky is insufferable.

Unable to walk, unable to get out of bed. Jealous of the dust bunnies and all other moving unknowing things. The minutes build and you bear them on your shoulder like phantom bricks, the heavy load of an empty moment, and then the hours come, inevitable, breaking your back.

remember the retching. A wretched way to live, waves of sickness like the tides coming in, swelling up and foaming at the shore. A tidal heaves up, up, and out, crashing down, we've had an exorcism all over the kitchen floor, hallelujah, praise jesus. I exorcise all day long. they say it's good for the soul. After the floods an eerily satisfying calm settles in, as if the body has made peace with it's own volatility.

remember the killing machine, the feeling of poison pumped through your veins, the sting of the needle as it went through your chest. You could taste the chemo under your tongue. It would not go away. It became part of you and you became it, inhuman. You would sweat inhumanity. Murder poured out of your pores. The paradox of your body wanting to live, violently so, and your only cure is to kill it...

I wrote this in my journal around June. Obviously it was written for myself, but now I'm giving it to you. I come back to it every so often. It's easy to feel helpless post cancer, but we're not. We're not helpless or hopeless. We have an amazing amount of strength within us.

Trigger Happy

I haven't told you, beloved blog readers, because I don't want to be worrisome, but I've been having pain where my tumor used to be. It's been an ordeal to find an oncologist here in San Francisco- they won't assign one to you unless you've seen a GP, which I don't have, duh, because I have cancer. It took weeks to get a referral from my own oncologist back in Sacramento, but finally, I was able to get an appointment on Tuesday.

This was my first time in SF oncology and, um, talk about triggers. They make you wear a wristband regardless of whether you are getting chemo or seeing a doctor, while in Sac they only banded me for chemo. So, as you can imagine, the band sent me into panic mode and tears started welling up in my eyes.



Fast forward to the doctor visit, they don't think my pain is cancer related since I was NED on a scan 3 weeks ago. It's probably scar tissue, but we will "watch and wait" (don't you love that phrase?). I asked when I could have my port taken out, and the onc said I've got to wait until my next scan. "But when is the last time you had it flushed?", she asks. "Uh, May?" I mutter. Oh crap, I forgot about port maintenance. "You need to get it flushed TODAY." Double crap. I can't face the infusion room just yet. But... responsibilities and such. So I sit in the ugly mauve alcohol soaked recliner and try to keep it together.

No such luck. I start hyperventilating and sobbing, trying to explain to the nurse that it's the first time I've been back since chemo. She just looked sorry for me. I sucked it up towards the end and got my saline/heparin injection just like I've done a million times in the past. I was numb throughout my treatment, but now that the trauma has settled in I'm a nervous wreck during such small procedures. I hope it gets better.

On the positive front, I am getting ready to start my senior year of school, the one that I had to quit in leiu of chemo. I am excited. Let's hope I make it past the first class this time!

PTSD and me

I've been having a difficult time with post traumatic stress since the end of chemo. I am avoiding the hospital like the fucking plague. Who knows, the black death could very well be lurking the halls of Kaiser somewhere. Best to stay home, right? Wrong, I know I know.

I can't read the archives of this blog; it's far too painful. I don't even remember writing half of it. The words literally make my stomach turn. I have nightmares, insomnia, et al. I can't be in any sort of sterile medical environment without breaking out in a cold sweat. Whilst having my teeth cleaned recently I had a mini panic attack because the dentist's chair reminded me of the chemo recliner I befriended during treatment. Blarg. Barf. Ick.

My point, I suppose, besides bitching, is that cancer doesn't end once you're in remission. It becomes a terrifying part of you, kind of like how Tom Selleck and his moustache have become one single entity. It haunts your dreams. I could go on.

Have you had any experiences with PTSD since cancer? I'd like for this blog to become a forum to help those going through something similar, so please comment!

"...Slowly, slowly the wound to the soul begins to make itself felt, like a bruise, which only slowly deepens its terrible ache, till it fills all the psyche. And when we think we have recovered and forgotten, it is then that the terrible after-effects have to be encountered at their worst."-D.H. Lawrence

el jay cross-post

Just a few pictures of the new room. Moved in Sunday. It's fascinating, how posessions can reaffirm one's identity SO strongly. You'd think that having your stuff packed away for a year and living elsewhere would somehow solidify your own self awareness, but au contraire! I felt lacking, I felt lost. I couldn't quite put my finger on it, but as soon as I unpacked my knicknacks and books and clothes something clicked, I felt like Kaylin again, capital K, not cancer ass-kicker or patient or whatever. Just Kaylin, and I like this.



Grandma's cigar box and a clay skull sculpted freshman year.



my gents are happy to be out of that stuffy cardboard box.



12x12 living space SLASH sewing studio, not quite sure how I will make this work...


Fearlessness isn't a lack of fear, rather, it's a mastery of fear. I'm not afraid of much anymore. I am slightly afraid of cancer reccurance, if only for the inevitable decision I will have to make, but I am most certainly not afraid of death. Or pain. How many people, very honestly, can claim this at 24? I am content with the life I have lived because I've tried my very best to be an honest and passionate woman. I am broken, mentally and physically, but I'm confident that I'll adapt and overcome. Most importantly, I am happy right now. HAPPY. I will never ever ever ever EVER subject myself to the horrors of chemo and radiation and debhilitating surgery again. I gave it a sporting try but now I'm done. I am, um... master of my domain.

Long time no update!

I have been busy... real busy. Moving back to SF next weekend, still job hunting, fixing up the scooter, purging all of my posessions and old memories. Life after cancer is a wonderful and terrifying thing- my body feels stronger with every passing day, but my psyche is taking quite the beating. I feel hollow and numb. When anxiety builds up and becomes too much to handle, I simply shut down. At times I'm unable to run simple errands, or even update the blogs I'm committed to. Though chemo was the toughest trial of my life, I was able to revert to a safe, catatonic state in which I had no responsibility other than getting well. Now I've got to start living again, hurrah.

I see that this blog has been listed as a Top 50 Cancer Resource on asbestosnews.com. To whoever wrote the article and the touching review, thank you! I recommend checking it out, it's got links to many other fantastic blogs in the young-adult cancer community.

Occasionally I will get emails from others who are just beginning this journey and have somehow stumbled upon my blog and found inspiration in my story. I LOVE receiving these letters. I am humbled and deeply grateful that this blog is doing exactly what it was intended to do. It validates my entire cancer experience.

In other news, my hair is gowing back! IT COMES BACK, trust me. It took about a month, but now I've got eyebrows and armhair and little downy fuzz all over my head. Lately I've been having frightening hair dreams- last night I dreamt I had an afro, while last week my hair came back in a ring around my head. Terrible!

Oh, another thing. I recieved my retroactive disability check yesterday! Holy. Crap. I am so, so thankful that I took the time to fill out all of those forms and pester my oncologist for weeks to get a testimony. I urge any of you who haven't considered SSD to talk to a social worker and see if you're eligible. I hadn't worked "on the books" since 2007 and still qualified. Without it, I couldn't possibly start my life again so soon. More info at www.ssa.gov.

Here are video/pictures from my surprise birthday party last month. It was ridiculous, the amount of love I felt that day...

welp.

I am officially in remission.


ummm.


so...



yeah...



now what?

.
..
...


shit.


I'm not special anymore, am I? I'm jobless, homeless, broke, bald, and "healthy" on paper. My oncologist seems to think I'll be fit for a 40 hour work week by next month. Thanks cancer, thanks a lot.

Thanks for the "life lesson". It's been fun, really.
IT'S BEEN FUCKING HILARIOUS.