Sunday, September 16, 2012

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

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. " 

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..

Saturday, July 28, 2012

I got a cancer survivor scholarship

AUGHH! I'm so stoked!

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

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:

Saturday, July 14, 2012


Hello, my beautiful lovelies!

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


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.


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.

Monday, July 9, 2012

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!

Thursday, April 26, 2012

Friday, April 13, 2012


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

--Antoine de Saint-Exupery

Thursday, April 12, 2012

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.)