Things I Wish I Knew Before I Was Diagnosed With Cancer: Yes and No.

http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

While there are nuggets of truth in this article, there are many things I disagree with or think should be dismantled in this piece.

1.  "You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it. "

uhhhhh...no. 

One of the contributing reasons that we  have a "different" self-identity is because we are granted new (and oftentimes) oppressive labels for our status as people with chronic illnesses and medical subjects: "sick"; "cancer-patient"; "survivor"; "test-subject" for example. We lose the privilege of being seen as having "able" bodies and it is far from being a "better" identity. Disclosure of my illness results in pity, fear, and patronizing sympathy. The discovery of my illness is responded to with a medical, mechanistic detachment from my humanity. I am not a person anymore. I am a system of carefully synchronized organs and flesh-bound patterns to be predicted, controlled, and intervened upon. To survive, I had to disassociate from the pain and betrayal that emanated from my body. I was told that I could "overcome" my disease, I had to be strong. What they're saying is that my body is transgressing, deviant and I need to gain control over it: Cells multiplying out of control, invading my lymph nodes, and encroaching upon life-sustaining organs. Since my body is out of control, doctors and oncologists should to tell me how my flesh-system is dysfunctional and that their system is the only legitimate path to healing. 

I do not embrace the Cartesian split that denies my spiritual, emotional, and psychological reality and tells me that I must only listen to the "rational" or "logical" part of my mind. I don't trust a philosophy that has justified the marginalization, exploitation, and harm of communities of Color; Queer-identified people; women; people with dis/abilities...I am working to filter through the medical discourse that has forced me into detachment from my body. I will not give into it. 

This is not to be confused with a complete rejection of medical science or medical interventions. I simply resist that this is the only "right" way to healing and resist forces that promote medical objectivity; disconnection (in lieu of interconnectedness); and the denial of corporeal realities. 

2. "You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. [...] The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking."

Love yourself and you'll overcome...blah blah blah. Same old crap. Stop using individualistic tropes to distract us from what really are the consequences of ableism. You'll get pity--in the form of cards, emails, voicemails, flower deliveries (picked by exploited Third World communities and shipped to the states)--but are you actually getting support? Are you actually getting resources to support your healing and/or dying process? Are there warm bodies there in the room with you, sharing your pain or working with you to advocate for your rights as a patient? Are people using their energies, skills, resources and capacities to change the medical industry or to perpetuate ableism? Isn't "inspiring" others (usually those without a dis/ability and/or chronic illness) as a form of "supercrip" mentality (see Eli Clare's 'Exile and Pride')?

3. " When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward." 

Isn't this the definition of privilege? If you are privileged, you get to "walk away from it" and "return to your life." As people with chronic illness and/or dis/abilities, we will always have this as a part of our epistemology (the way we see the world). But we don't get to shed it when everything is said and done.


Just my two cents..

I got a cancer survivor scholarship

AUGHH! I'm so stoked!

I received a scholarship from Cancer for College Scholarship foundation! CHECK IT OUT!

http://cancerforcollege.org/Past_Recipients.html

If you are a cancer survivor and a student, I highly recommend that you apply. (Remember that you will need a letter of verification for your oncologist and/or radiologist!) Here is the link for next year's application:
http://cancerforcollege.org/CFC_Application.html

FREE AND CLEAR

Hello, my beautiful lovelies!

I am so glad to report that my scan came back free and clear! No cancer!

Wooooooohooooooo!


But... there was some "weird stuff" happening with my thyroid.


Yeah. That's what I said.  Weird schtuff. Are you f'ing serious? 

What MORE do I have to put up with? I ALREADY HAD TO GO INTO THE DONUT OF DOOM. (Ya'll know what I'm talkin' about, right? Check out my archived posts for all of the inside jokes!) I was also pissed (perhaps childishly so?) that I had to get poked twice in the span of one hour. I think was a little bit spoiled at the SCCA. If I had procedures requiring an IV, they just drew blood from the IV instead of making you endure multiple stab wounds in the course of one day. 

A few days after the scan was completed, I met and chatted with my oncologist. He said that I had some "interesting uptake". Hah. Glad that my uptake was so "interesting" doc! After we talked about my results, we made a plan to keep an eye on it because I am at risk for hypothyroidism in the years post-radiation. In case you're not in the loop, lovely followers, I had mantle radiation scanning from my throat to my diaphragm. Here's a picture of me with my radiation "roadmap." For references purposes, obvi. ;-)   (Also please note my adorable curly mullet forming!)

As you can see the areas marked for radiation is pretty much grazes my thyroid. While my blood and counts were all within normal range, we're apparently "keeping an eye on things." While I sound pretty annoyed about this, I *was* warned that this would be a long-term side effect. I'm planning to do a lot of research about this crap before I dive into taking some synthetic or animal-based thyroid medication. I'll share with you what I know as I start doing research.










I guess I sometimes I feel like most of my medical issues are a matter of "wait-and-see." I hate the wait-n-see crap.

I want to know now, darn it!!!!

I hate waiting.
I don't want to be sick anymore.
None of this should ever have happened to me.
I don't like the CT contrast.

I WANT TO KNOW NOW.






Okay, I promise that I won't be rolling around on the floor having a tantrum the next time I go to the oncologists office, but sometimes I feel like it would definitely be cathartic.

First PET Scan: 2 Year Mark?

Helloooo my faithful followers,

I am sorry that I've neglected this blog for so long! I've been quite busy finishing up my first year of my doctoral program. You know the routine: long hours; copious amounts of caffeine; mindless grading..

As I mentioned in a prior post, I found a new oncologist where I live and now I'm scheduled for my first follow-up PET scan this Tuesday.

I am. so. nervous.

I know that this is normal, but I won't be able to relax until I'm done with this gigantic hurdle. PET scans are my absolute least favorite procedure ever. The last time I underwent a PET scan, I didn't take the getting-comfortable-stage seriously and ended up being in so much pain for the whole 60 minutes that I was expected to lie completely still. I was in tears by the end of the procedure and I was soooo hungry and tired. You're not allowed to eat anything for 6-8 hours prior to the procedure in order to "starve" your cellular tissue. The PET scan tracer is a radioactive sugar solution. Cancer cells metabolize much more quickly than normal cellular tissue and therefore will "glow" in the resulting images. Getting the solution injected into you is a really, really weird process... Since the nurses do not want to be exposed to the radioactive material, the syringe is encased in a strange metal casing (see above). It kind of looks like having a caulking gun attached to your IV. Weird.

I am just so afraid of having cancer again. I know that this a natural feeling that all cancer survivors experience, but it all feels so real and imminent shortly before a scan. I've been so focused on my work that I haven't had time to really take stock of how my body feels and think through how I'm feeling about the impending scan. I am wanting certainty that this will never happen to me again, but I know that there are no guarantees in life, especially with cancer.

Of all the things to be annoyed and anxious about, I'm annoyed about the process of having to get my IV and abstain from food and caffeine. No diet coke for 12 hours. I don't know if I'll make it! I also really, really hate the feeling of having the IV placed in my arm. Totally cool with collecting blood, but letting it linger in there still gives me the skeevies even after having a power port in my heart/chest for nearly a year. Thinking about that port just...ugh. Gross. Yuck. No.

I remember telling my oncologist that I didn't care that it would be "convenient" to have my port still in my chest if my cancer came back. I wanted that thing OUT...ASAP. If he wasn't going to remove it, I threatened to do it myself. That was the probably the single most disgusting and uncomfortable thing I have ever endured. I am determined for this to never happen to me again.

I'll keep you all updated on the results of my PET scan!

Love

"Perhaps love is the process of my leading you gently back to yourself.”

--Antoine de Saint-Exupery

On April 2nd, my mother passed away from breast cancer and an auto-immune disease called scleroderma. Thank you to everyone who sent messages of love and support over the past couple of weeks. It has made everything so much easier.

Thank you from the bottom of my heart.


Peach roses from my mother's funeral arrangements. (Peach was her favorite color.)

Radical Self-Love

It's been over five years since my breast reduction surgery. I was flipping through an old journal and I came across some things I wrote before and after the procedure.

"These giant balloons can't possibly be part of my body. They don't feel right. They don't even feel like a part of me."

I wrote about emotional pain. I wrote with self-loathing and criticism. I wrote about how shirts didn't fit right and how it was impossible to take notes in the desks at school. I literally selected my courses so I didn't have to squeeze into the auditorium desks (the ones with the flip open desk surfaces).

Now I realize... the chairs were too damned small for my generous rack, lovely readers!

While I genuinely experienced physical back/neck pain, I realize that my self-loathing was also shaped by the constraints of the heteropatriarchy. My breasts must be validated. Acceptable. Alluring. Sexy. Pleasing. Just big enough to be "womanly", but small enough to avoid circus-freak stares. Surgery certainly helped shape a more healthy future for my back, but it didn't change the self-hatred and criticism. After a brief period of novelty and happiness with my new size, the self-loathing began to well up inside of me. I was no longer able to project it on to my breasts.

Now it was the surgery scars.
My muscular calves.
My unruly curls.
My curvy, fat body.
My love of other breasts.
My laughter.
My face.
Myself.

I realized that I hated myself. I absorbed these lies and accepted them, unconditionally, as truth.

Then it clicked. I suddenly understood the phrase, "Self love is a radical act". Wow. How come I had never realized this before?! I was kept docile and self-destructive by the very nature of the oppressive narratives created about bodies.

What is more rebellious than loving ourselves completely and unconditionally? What is more radical than feeding, loving, caressing, touching, accepting and taking care of this beautiful body of mine?

We deserve nothing less.

New Doc and Health Update

Started seeing a new oncologist and I'm feeling pretty good about my choice. I have new insurance to navigate so naturally, I'm a little nervous! I was pleasantly surprised about their "up front" policy. They explain every procedure/charge/claim in detail during your visit and they get an estimate from your insurance prior to coming to the center. That way, I can budget my medical expenses. Yay!

So, I saw the doc. He was "impressed" by the knowledge I've gained about my illness and treatment. He explained that not many of his patients were interested in their treatment plans; health histories; medications; procedures etc. I was both flattered and concerned at the same time. How can someone NOT want to know as much as possible about their disease? I can certainly understand that some people don't know what to ask or where to get information, but I guess my personality is the "divide and conquer type." I want to know ALL THE THINGS!!

Anyway, after the doc prodded around my neck, chest, and stomach, they took blood to check for any abnormalities. I really hate it when they poke around into my neck and collarbone. It feels really, really unnatural.
They have me scheduled for a PET scan in a couple of months. Yeah. Not excited about that. But this is the life of a cancer survivor! Even so, I'd much rather know if there are any beasties in there metabolizing sugar like mother-f'ing gluttons!

Fat =/= unhealthy

Our culture often conflates "fat" with unhealthy. I feel a lot of pressure from people to push my body to meet an ideal size/image by dieting and exercising. Even though I definitely am a curvy woman, I am not unhealthy. I get very, very tired of this pressure, seemingly from every possible direction, that my body does not "fit".

Even if I was totally sedentary, non-vegetarian, "overweight" or whatever, what gives people the right to police my body and what I put into it? This is not just about body-size and food consumption, this reflects a larger cultural trend of marginalizing non-normative others. Yet, sizeism continues to exist on the margins of feminist scholarship and activism. Size issues are inherently interrelated with other social issues. Ignoring one issue because it's "not personally relevant" or "too hard to understand" are excuses to ignore the effects of sizeism in our culture. What stops sizeist practices from policing what medications you choose to take (i.e.: contraceptives)? Whether or not you are allowed to have custody of your children (i.e.: the court case where a "fat" woman was putting her child "in danger" after feeding them a burger)?

Advocating around specific issues is good; however, it needs to go farther than that for effective social transformation. We have to see all issues of marginalization as inherently interrelated and of concern to feminists, womanists, and social justice activists. Otherwise, what stops us from perpetuating the same forces we are trying to fight?



(Image courtesy of "Fat Bitch Zine" by Aimee Fleck: http://aimeefleck.blogspot.com/2011/05/fat-bitch-1-zine-update.html)

Forgiveness

The Very Definition of..

sick·ly   [sik-lee] -li·er, -li·est, adverb, verb, -lied, -ly·ing.
adjective
1. not strong; unhealthy; ailing.
2. of, connected with, or arising from ill health: a sickly complexion.
3. marked by the prevalence of ill health, as a region: the epidemic left the town sickly.
4. causing sickness.
5. Nauseating.


The Very Definition Of
Oh I'm sorry, does my port scar nauseate you?
Do I make the hair on the back of your neck stick up?
Does the thought make you cross yourself?
Thank-your-lucky stars that it didn't happen to you?
The oh-so-very-special you?
Did you panic imagining yourself sitting in that hospital bed
gratefully eating butterscotch pudding and saltines
asking the universe to give you the strength to keep it down?
Did you envision your body becoming lost in wires, lines, and devices designed to keep you alive?
Did you imagine your body treated like a living experiment
the newest receptacle for medical science?

Did you imagine losing your hair?
Did you imagine losing yourself?

My body refuses to fit your rigid little boxes. I'm breaking through this shit with some advice: Never call me "sickly".

The truth will set you free, but first it will piss you off. --Gloria Steinem

Peripheral Neuropathy

Ugh. Just...Ugh.

Considering that I did not have a super long chemo treatment regimen, I thought that I might be exempt from "Peripheral Neuropathy"...capital P, capital N!

DUN DUN DUNNNNN!!!!

"Perpipheral Neuropathy" just sounds so..mysterious and scary, right? But once you do get it, man does it feel WEIRD! It's like I stuck my finger in a light socket, electric waves shooting up and down my arm. Sometimes it feels like I slept on it and I start getting those weird weak, numb feelings deep in my right arm. I like to try to convince myself that it's from all of the crazy typing, note-taking, and computer work that I've been doing since I got into my grad program.

I was wondering if any cancer survivors reading out there have ever had long-term eye twitching and/or ocular migraines as a side effect of chemo/radiation treatment. I once had a really strange headache, paired with a "ring" or "aura" in my left eye. Everything seemed to feel like I was looking through a fish bowl lens. I am definitely due for a check-up so I'll be sure to bring this up with my doc, but that weird migraine really, really freaked me out. I've heard from other cancer patients that chemo can mess with your vision. Hopefully it isn't anything serious. o_O

I've been really bad about keeping up with my health since I got to Texas. I had to wait for my insurance to kick in (December) and now I'm on the hunt for new oncologist that won't break the bank. Health care is so damned expensive. I'm still paying off bills I incurred in 2009! I honestly cannot afford to get sick again and it amazes me that anyone can stay healthy in this damn country! Moreover, I have to make sure that this person is "in my network" so I don't have to pay more. I can hardly afford to pay my bills and keep food on the table, let alone pay extra for my long-term follow-up care.

Ugh..Just Ugh!

Weeping

A fellow Smithie lost her battle with cancer, January 30th, 2012. This disease is relentless.

Please keep the Capen family in your thoughts.

http://kirbystrong.wordpress.com/

A Big "Thank You!": Fundraising Update

Thank you to everyone that donated this past fall. I was able to put your donations toward the cost of textbooks. I am so grateful for your support! It is my hope that continued fundraising will help me continue my studies. Please accept my deepest gratitude and I encourage you to pass on my fundraising page to anyone that is interested in donating.

Hope you had a wonderful holiday!

http://www.alltuition.com/community/Susan.Schmitt/

Need Insurance?

It saddens me that people who are ill cannot be allowed to focus on healing and not on their wallets. It my hope that changes in insurance and health care will support the well-being and health of every person in our country.

To all folks without health insurance and with "pre-existing conditions", check out government supported PCIP insurance plans: https://www.pcip.gov/

It has helped many people with serious medical conditions and who are without insurance and denied coverage due to exclusionary and subjective criteria called "pre-existing conditions". This is a transitional program until 2014 when "pre-existing conditions" will no longer be allowed to define coverage criteria. If you can't afford the premiums, there are Medicaid options to help you get the insurance and care you need. Please pass this on!

While many people will still have lingering medical bills even with PCIP, it is still a much needed resource and a step in the right direction. It just amazes me, don't medical personnel take oaths to heal not HURT people? Since when did medicine become a source of capital and not about healing the sick and caring for the weary? When was it ever okay to swindle those who are in most need of help? The sheer dishonesty..

This post was inspired by an image I saw at: http://giveneyestosee.com/blog/

Cancer and Beauty

I think this is an awesome website, featuring photography of women who have/are undergoing breast cancer treatments. http://www.beautyandthebreastproject.com/index2.php

It inspired me to share my own post-cancer survivor pictures. This is a big deal for me. I am pretty self-conscious of my multiple scars and the marks that allude all manner of tubes, biposies, and medical devices. The area that housed my port has exploded into a very visble, red kleoid scar. I am still in the habit of tying a scarf around my neck or wearing baseball t-shirts to hide it. I'm learning to show it off more, but I'm afraid of getting the same old questions, "Wow, how did you get that nasty scar?", "What happened to YOU?"

This is my venture into cancer self-confidence! Enjoy! [not too much! ;)]


Hamming it up.


















Showing off my survivor tattoo!










Stay strong! You are beautiful!

The Old Song-n-Dance Routine: Cancer Survivor Scholarships

I've been keeping myself busy this winter break by applying for cancer survivor scholarships. While I am very appreciative of the opportunity to apply, I often feel like these essays reinscribe some unfair and limiting stereotypes about cancer patients and their experiences. For example, for one scholarship I was asked to write a 1,000 word essay addressing one of the following prompts:

1. How has cancer impacted your life, illustrating why you should be selected as a scholarship recipient.
This is a pretty mild question, but there are some very subtle implicit assumptions. Cancer survivorship is a spectacle. We, as cancer survivors, are expected to rehash, over and over, the traumas of cancer treatment. We are expected to do so at anyone'e beck and call. We are expected to have cancer impact our lives profoundly for it to be a legitimate experience. You want money for school (which should be available for everyone)? Well, then you're just going to have to entertain us with your "terrible" story.

2. Describe how you have used your cancer experience to help others going through the same experience.
I know this sounds selfish, but are we expected to accept a very narrow niche(helping other cancer patients) just because we had cancer, too? We have enough on our plate looking after ourselves, don't you think? Is it not okay to pursue our own interests? This type of myopic focus encourages to ignore the systemic causes of cancer and become so issue-oriented that we won't realize how we are oppressed/oppress others.

3. Tell us about someone who inspired you during your treatment and how this impacted your decision to go to college/continue your education.
I can tell you that pretty much the only thing that inspired me during my treatment was a clean PET scan and a barf bag close by.

4. If you were to start your own non-profit cancer charity, what would be your mission?
Like I said, didn't we serve our time? Why does cancer status automatically denote that we should be involved in activism or charity? Is the work that I am/was already doing not important? As a survivor, why does my life's work have to revolve around cancer? I'M SICK OF CANCER.

I'm sure that there are many wonderful responses to these questions out there in the world, they're just not for me! Instead of trying to fit these assumptions, I just wrote my honest story; about how I was hardly making it by, how my partner and I left our jobs/school for treatment, how money was tight, how I was treated when I came back to grad school. I was honest. Maybe, it'll be so off-beat that it'll warrant some attention. *sigh* I sure hope so.

For all you cancer-survivors reading, you should check out I'm Too Young For This! /Lance Armstrong Foundation for tons of scholarships for school and financial obligations incurred through treatment: http://i2y.org/ (Click the bubble, "I need money" and it will link to you to all sorts of charity and scholarship goodness.) It doesn't matter where you are in your status or treatment, you are eligible. Look 'em up!