We're baaaaack!!
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Today I want to get the ball rolling by reiterating the philosophy around here. And then telling you a little bit about my journey.
Follow me over the...(orange dingus?)
KosAbility is not about disabilities.
We are about helping each other.
We are about achievement.
We are about bucking the odds.
It's more about challenges,
about spirit,
about accomplishment.
If you live a life of challenge.
If you are a care giver.
If you know an inspiring story.
If you know someone we need to hear about.
If you need a shoulder to cry on
Let us hear from you, we want to hear your story.
There are plenty of openings left now but they fill up fast. The Wednesday slate is clean as of now. Dates available through June are:
Apr 6 indiemcemopants
Apr 13 allergywoman
Apr 20 glendaw271
Apr 27
May 4
May 11
May 18
May 25 barbwires
June 1 alexandra lynch
June 8
June 15
June 22
June 23
I am the moderator of KosAbility’s Wednesday diaries and I maintain that schedule. If you’d like to sign up for an open Wednesday, send a message to ulookarmless, comment below, or email me at ulookarmless[at]gmail[dot]com.
Upcoming Sunday Diaries
Apr 3 rb137
Apr 10 boran2
Apr 17 KitsapRiver
Apr 24 [Easter holiday]
May 1 MsGrin
May 8 KibbutzAmiad
May 15 bigjacbigjacbigjac
May 22 LWelsch
May 29
June 5
June 12
June 19
Nurse Kelley (KelleyRN2) is the moderator of KosAbility’s Sunday diaries and maintains that schedule. If you’d like to sign up for an open Sunday, email her at KelleyRN2[at]gmail[dot]com.
Check out the KosAbility Archives.
An Update On My Ongoing Saga
I have just successfully completed a 6 month course of chemotherapy for CLL (Chronic Lymphocytic Leukemia) which has been with me for at least 12 years now according to my oncologist and will be with me for at least another twelve! (good news indeed)
This is the third cancer in the past 7 years. Neural sheath sarcoma took my left arm in 2004 and was supposed to finish me by the end of that year.
In 2005, I suffered cardiac arrest in the middle of liver surgery for that same cancer as it spread throughout my body. However, with the care of a great ICU team and insertion of a Pacemaker (later proven to be faulty!) I once again survived.
By 2007, the 3rd round of chemo had me free of cancer but the side effects had caused my old epilepsy to flare up with several bad seizures, the worst of which was when my neighbor found me collapsed in his cactus plants outside his front door! I was not a pretty sight for the next few weeks.
Then, in late 2008, I contracted squamous cell cancer in the tongue. This meant 6 months of daily radiation on my neck and jaw with weekly erbitux infusions. Since I only have one arm, a feeding tube was impossible for me to manipulate so I lived on liquids for the entire time. "Ensure" to the rescue. My weight fell from 207 to 148. I am now 164. Strangely, I really needed to lose the weight, 160 is about right for me.
Once again, I survived a cancer which often debilitates, causes removal of the jawbone or tongue. It's the same cancer that took Ted Kennedy's life when it migrates to the brain. Last week my ENT oncologist informed me that we have passed the two year anniversary of the final treatment and she pronounced me free of that cancer.
So, now I am awaiting the next month or so to see how I respond to the end of chemo for CLL. The side effects are not pleasant, I have suffered a "chemo induced" cold for 6 months, my chest feels like I'm in a refrigerator whatever the temperature. And my skin is always itchy and often painful. One of the chemo drugs causes symptoms akin to shingles. This necessitates prescriptions for acyclovir, bactrim and a 2.5% steroid cream on top of my seizure drugs and heart meds.
The only unknown factor in all of this is the original neural sheath cancer. This is a rare disease and not well understood. There is little known about how it is acquired and less about how it spreads. So far I have survived well past the normal life expectancy for those who contract this cancer. My oncologist calls me indestructible, I prefer to think it's a combination of positive thinking on my part and great skill on his part.
My motto in life is an old Latin saying: "Nil illegitimi carborundum"
Translation: "Never let the bastards grind you down"
It would be remiss of me to close this week without dedicating this, and every Wednesday KosAbility diary to the original Wednesday host here. Without the passion of indiemcemopants we would not be here at all. He has gone on to fight bigger fights. Look for his posts, always good reading, always fiery, always challenging the establishment.
For indie
(3/28/2011)
Never was a truth seeking rocket
Powered by pure passion for justice
Wrapped in the flames of equality
For every lifestyle gay or straight
Fired from the decks of an unlikely
Conservative southern gunboat
To burst into the sky; explode
In brilliant rainbow hue to state
The case for once and all "We’re
Here, we’re queer, deal with it!"
indie asks no quarter. Just to live
To live in a world free of hate
CJ Campbell
Indie, may good luck be your constant companion wherever you go.
Peace
CJ