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.




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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.

I'll figure it out eventually.

June & July have been full of the usual minutia of a young, broke(n) cancer survivor trying to earn a living in a creative field. Mainly... looking for jobs, interviewing for jobs, doing unpaid projects for jobs, and then not being called back, ever, for jobs. On the upside, my portfolio is bangin' & every time I do unpaid work for a company it increases its bangin'ness.

The downside is that I can't afford a living, still. Barely making it through rent every month, barely paying my cc minimums, barely affording food (I usually dig up quarters every evening to buy some produce for dinner from the local bodega). Forget about medical care, because I have none. I had a sinus infection a few weeks ago that required treatment, and luckily I was able to find a great Free Clinic here in Brooklyn that would dispense antibiotics at no cost-- the catch is you have to wait 8 hours to be seen just like the other 30 people in the room. Doing that once every now-and-then for an emergency is totally bearable, doing it every time you have a medical issue? not so much.

Honestly-- everything I've been going through is normal for someone my age with self-inflicted creative goals. I could've been an accountant, right? (yeah right.)

I knew it would be difficult moving to NY and I did it anyway. Struggle is requisite to personal growth & fulfillment, I say to myself as I try to avoid conversation with the homeless gentleman with gonorrhea seated next to me. We both left that day with a gigantic gift baggy of condoms & lube, swag from the city health initiative. I hope he used his, and not just for water balloons like I did.

What I didn't bargain for, here in NY chasing the design dragon, was Cancer. If I could've known about my future cancer/chronic pain/medical issues, I would not have spent my life learning the art of the cloth. I would've sensibly found myself a steady job that left me unfulfilled but offered medical insurance, peace of mind, and a decent quality of life.

oh well.

Anyone need a freelance designer? I have a bangin' portfolio...

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.

About Our Comic

I want to make a post to let my readers know about our comic-book project that was funded by Kickstarter last year, and I want to be very direct & honest, as usual. We grossed $7,000 in funds to finish the project, and this went into our living expenses for 3 months as we worked, supplies for backer prizes, and supplies to produce a professional comic, including drawing materials and a scanner.

The plan was to have everything done by the time [ehm-tee-vee] airs a documentary series focusing on my life as a young cancer survivor. The show also covers our production of the "preview" comic & how we found our awesome publisher.

Unfortunately, our money ran out before we could finish the book. The reasons for this are many-- some personal, some not. Originally our goal was to publish a 26 page comic. But as we went along, Jon, our illustrator, wanted to make it bigger-- 100 pages bigger. I have always expressed my concern over this, that we should edit to stay in budget & meet our deadline. Jon is very enthusiastic about this bigger, more involved comic, and assured me that he'll finish the illustrations. I share his enthusiasm, because the story & potential to help people is great. However I feel very uneasy about asking the community for more money to finish this project.

The money would go to backer prizes, and Jon's living expenses as he finishes this 100-page comic.

What do you guys think? Do you want to see another Kickstarter fundraiser, or are you happy with the "preview" comic we have published? The story that Jon & I have developed has a lot of potential, and I want to see it finished. But is asking the cancer community for another $5,500 morally acceptable? Am I reading too much into this?

I would really appreciate your input. I feel the project was somewhat mismanaged, and I am partially to blame for this, because I've got a lot of other cancery things on my plate-- I don't have the energy to micromanage. I put it all in Jon's hands, and although he's done an amazing job so far, the scope of the project has overwhelmed its creators.

thoughts? I want this project to be for you, and I want you to have a say in its fate.

here is a link to check out the new project.

Thanks for reading, guys!