MODERATOR'S NOTE: Today's diary was written by
ulookarmless. CJ is unable to join us today, but for a happy reason - he's spending the day with his sons. Nurse Kelley will be moderating as usual and can hopefully answer questions you may have for CJ.
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.
Disability comes with a physical price that all can see. Not the outward trappings of a missing limb, or a wheelchair, or twitches, but the stamp of "difference" that lets others know "handle carefully", "step around", "something broken here".
The resultant environment for most of us is a world slightly out of kilter at best and horribly unforgiving at worst. There is no way to stand on level ground when you find it difficult to identify the attributes of that same level ground.
A month ago I was hospitalized with severe chest pains. My son and I were walking to the grocery store when a very large Besser block (or so it seemed) slammed into my chest and forced me to sit down on the nearest bench. My son, who is 14, called the ambulance, and accompanied me to the local county hospital emergency room where, after several tests, I was admitted for a 4 day stay and treated for a heart attack.
Subsequent tests showed no heart failure of any kind, but the chest pain persisted. While hospitalized, my oncologists came to see me to inform me that my latest blood test revealed that I now had a third, that’s correct, a THIRD, type of cancer! Leukemia! Man, was I having a wonderful week!
Not to worry, there’s always some good news mixed in with the bad. In the doc’s words: "You have Chronic Lymphocytic Leukemia, it’s the kind people die with, not the kind people die from." Then he arranged for me to see him later in the week.
I was discharged despite the persistent chest pain with an appointment to see my oncologist the following day. While in the oncologist’s waiting room, I have a sudden pain attack again. Wake up again in Emergency, leave with prescriptions for Vicodin and Lyrica.
Vicodin is an old friend of mine, one whom I hate with a passion because she demands to dull so much of my brain in order to still the pain.
Lyrica was new to me. Within three days, this drug was a nightmare. Enough said. Both neurologically and physiologically. Disorienting and bleeding facial rash.
Now we’re getting to the meat of the problem. Finally get to see the oncologist to discuss the Chronic Lymphocytic Leukemia (CLL). I should probably tell you that CLL is my third go-around with cancer. In 2004 I had my left arm amputated due to Neural Sheath Sarcoma that was supposed to kill me before the end of that year. In 2008 I contracted Squamous Cell Cancer in the base of my tongue and through radiation and Erbitux injections in early 2009 I seem to have beaten that too. I live in a state of "fingers constantly crossed!" So, he orders a PET scan for the following week, a couple of extra blood panels and informs me that one of the symptoms of CLL is that the side effects of other drugs are increased threefold. This explains why the rash, disorientation, lethargy, buzzing, etc. have been so prominent. Unfortunately for me, I need to take seizure and heart meds, so I’m stuck between a rock and a hard place here.
Two weeks in and things aren’t getting much better. The Vicodin is easing the pain. The brick is still there on my chest. The cardiologist says the pain is neurological. The neurologist says the pain is neurological. Their advice is, if you need to stop, sit down! Some help. My oncologist, on the other hand, is
A problem solver
My friend
Intelligent
Worth his weight in gold
"Let’s try this, maybe we can help the pain and kick the CLL in the butt a little before we get the tests done. I want you to try a steroid for the next week," and he put me on Prednisone 3 times a day for a week.
By last Wednesday, the rash had gone completely. The pain had been cut in half. My energy level had been increased significantly and the steroid dosage is now moving down to one a day!
The PET scan and blood tests are back. The CLL is at an advanced stage. Doc says no treatment is indicated immediately but will start sooner rather than later.
There’s another side to this story that involves the KosAbility Community and the wondrous Sara Reed. When I was hospitalized, I asked my son James to email Nurse Kelley to let her know that I would not be able to participate in the diary that day. Kelley let others know and before I could turn around, the mailman knocked on my door carrying a box bearing the most wonderful gift I have ever received apart from my children. When the infusions begin I will be covered in your love.
To Sara, Kelley, and every one of my friends, although never met, I hold you all as close as those I grew up with, we are family.
Peace
CJ
Nurse Kelley's Postscript
Some of you may know that CJ is a poet. I'd like to end this edition of KosAbility by sharing with you a poem he wrote when he learned cancer is not yet done with him.
MATH ACCORDING TO CJ
When first advised I had cancer
And told I had 6 months to live
That demi-year has become
6 years
A twelve-fold increase
In the expected span of my life
Later the world’s most famous
Orthopedic cancer surgeon advised
Removal of the left arm at the shoulder
Wiser counsel prevailed.
I only lost just little above the elbow.
Half the original plan
State of California offers to help
Provided I pay the initial $750 of my med bills
Every month
Even tho I document my monthly expenses at $1470
And my monthly income at $1460
No help from that quarter!
Somewhere along the way, I ask the docs to share my files
To learn "Not allowed, for your protection."
CJ now refuses to complete forms
Containing data already given elsewhere
CJ is creating his own single source national patient medical record registry
One plus one equals one
Today, while discussing treatment for my new cancer I learn
One of the symptoms of the disease
Is a threefold response to unwanted side effects
Of other drugs
An unwelcome factoid for one
Dependent on drugs to keep him functioning
Also learned that my CLL is advanced stage
Normally would give me only 4 more years to live
I believe that, given my cavalier attitude to math in general
However!
Thanks to my 12 times multiplier,
I may be around for another 50 years!