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.

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.)

pain for the holidays

Since I forgot to renew my opiate prescription before I left for the holidays, and since I am subsequently curled up in the fetal position at my mom's house unable to move from excruciating pain and withdrawal symptoms (watery eyes, hot flashes & chills, MONDO headaches, excessive yawning), I thought I'd post about pain.

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?

give a neurotransmitter a BREAK, mannn.

I can't remember what it feels like to not be in physical pain.

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?

I'm so high maintenance

pain status: same as before, but now a lingering fatigue. I can sleep 14 hours and wake up tired. Also, my bones hurt. It feels exactly like the pain I got from Neupogen injections, like hot lava in your bones, burning and radiating out. It makes me restless, I want to stretch and shake the pain away. My fingertips are tingly. I yawn a lot. I've had a constant nausea for the last few days, which makes food unpalatable.

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.

no rest for the wicked

pain status: gradually increasing aching at tumor site, lower back, and left femur. The pain has been waking me up around 1 or 2am; I can't return to sleep unless I've taken 2 percocet and smoked a bowl. I will henceforth be referring to this blog as "increasingly annoying late-onset scar tissue pain is hilarious." Make note in your bookmarks.

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

I want to be de-cancered.

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!

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...

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...

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!