blogger cluster-fuck

I recently had a look at Kairol from planetcancer's blog-
everything changes

It's a great resource of information and I wish her well with the book. The community that I've been jolted so mercilessly into is incredibly inspiring- the more we are forced to confront our own mortality, the more selfless we become. Our instinctual urge is to ease the kind of suffering that one's own self has endured.

On said blog is a link to another blog, cake wrecks. examples below. The night of my diagnosis I made my mom to go buy me a whole birthday cake...


This is supposed to be p-diddy's b-diddy cake. I can only assume that's a fondant-elephant baby version of himself on top, but why is there also a picture of himself between his legs?




who will make me a "happy 1st chemo" cake? maybe with a little fondant bald head?

on trading sewing needles for hypodermic ones...

I have two self portraits today:


The first is after emailing my professor to say that I'd have to miss real class tomorrow in lieu of "chemo class". I get my port put in tomorrow as well. One of the only things I can't take- the only thing that breaks me down- is the very real possibility that I won't be continuing school. I cry every single time I email my teachers.

I also got a call from the surgeon this morning- the cancer has not spread to my lungs. joy! We have two options: surgery or radiation. Surgery would involve taking out half of my pelvic bone. It would be years of recovery, and I most likely would need to walk with a cane. Radiation involves some very unpleasant side effects and the possibility of me turning into Rogue or having some sort of nuke superpower. Needless to say, I chose this option.

I am grappling with the issue of infertility due to radiation. It's fucking depressing, let me tell you, because I would make such a rad mom. They will save my little eggies for me just in case, but really, it's like having your womanhood stolen from you.



Later on the sister and I went to the super AZN mega mart in south sac to buy ancient chinese secrets and jolly jelly shooters.


always match your shirt to your trolley.

I bought ol' san lazaro so I can light him up and meditate on the fact that at least I'm not that guy.

Picture of the day:


Today I went in for CT scans to see if the cancer has spread to my lungs. CT scans are like a really shitty amusement park ride- you hold your arms out above your head and hold your breath for... nothing really. The bed moves a couple feet. I want my tickets back.

My conversation with the technician went as follows:

her: "You have cancer, right?"
me: "uh, yeah."
her: "oh but you're too yooouuung to have cancer..."
me: "that's what they tell me."
her: "do you smoke?"
me: "no."
her: "see, that makes me feel so bad (laughs). I smoke but you're the one with cancer."

ahhahaha hilarious, I know.

Picture-A-Day

I have decided to take a self portrait every day from now until remission. My appearance will change, I will have highs and lows, my poses will refect what mood I'm in. In the end, I hope to compile all of them and use them as some sort of art project.

Here I am with dirty hair and no makeup, about to go to my first appointment with the oncologist Monday afternoon.



Hair, eyebrows, eyelashes, awkward slight happiness. I have a feeling this will change in the months to come. I start a rigorous chemo and radiation plan next week...

Last Weekend of Freedom, part 1

This past weekend was my last of relative normalcy in SF. I went to my first day of school- senior collection- with a weight on my shoulders that was unrelenting. How will I tell people? Will I have to quit school? What will my professors think? Fashion design is my livelihood, passion, my entire identity. Without this medium of expression my life feels pointless. In short: I WANT TO FINISH SCHOOL, regardless of cancer. I felt welcome and accepted by my peers and teachers, which was a great comfort. I can do this.

I am learning quickly how to deal with people who have just learned you have cancer. The response is often awkward. People are sympathetic, of course. Overtly so. They like to tell me about their gran or aunt or boyfriend's stepmother's friend's dog that got prostate cancer and died and shit, was that sad, that dog was so cute.

I find the most helpful reaction is a sincere "my thoughts are with you" followed by something funny about fake hair or du-rags. No stories of old people you know who died, no "but you're too young to have cancer" (how on earth is that helpful?), and DEFINITELY no "I'm so sad, you're making me cry, why me?". Why you? If I can deal with it, you can deal with me dealing with it.

I remember when my friend Sara told me she had non-hodgkin's lymphoma when we were attending community college. I was shocked at how stoic she was. All I could do was ask questions about treatment and say "I'm sorry to hear that, I hope you get better." I get it now! We have to tell 50 million people the same story over and over. It gets easy. Dealing with people's reactions does not...

Quote of the Day

"See, this is why I don't believe in god... totally rad awesome sexy girls get cancer but kelsey grammer gets a fucking emmy?!"

Livejournal Post, 9/2/08- The Diagnosis, dun dun dun..

Kaylin Marie has cancer at 23.

I always knew I had a crappy immune system, but really, I thought I'd last a little longer. I get to see the oncologist on monday so they can "stage me" and see if it's localized or if it has spead. I will likely need surgery and chemo.
I am an agnostic but... pray for me just in case?
It is an ewing's sarcoma. wiki says:

Treatment
Because almost all patients with apparently localized disease at diagnosis have occult metastatic disease, multidrug chemotherapy (often including ifosfamide and etoposide)[9] as well as local disease control with surgery and/or radiation is indicated in the treatment of all patients.

Treatment often consists of neo-adjuvant chemotherapy generally followed by wide or radical excision, and may also include radiotherapy. Complete excision at the time of biopsy may be performed if malignancy is confirmed at that time. Treatment lengths vary depending on location and stage of the disease at diagnosis. Radical chemotherapy may be as short as 6 treatments at 3 week cycles, however most patients will undergo chemotherapy for 6-12 months and radiation therapy for 5-8 weeks.

Prognosis

Staging attempts to distinguish patients with localized from those with metastatic disease.[12] Most commonly, metastases occur in the chest, bone and/or bone marrow. Less common sites include the central nervous system and lymph nodes.
Survival for localized disease is 70% to 80% when treated with chemotherapy.[13] Long term survival for metastatic disease can be less than 10% but some sources state it is 25-30%