Monday, January 25, 2010
I have a new definition of hell.
Its sitting for over an hour in a hospital waiting room, and listening to a nearby kid constantly playing the song "Witchdoctor" by the Chipmunks.
"I Told The Witch Doctor You Didn't Love Me true!
And Then The Witch Doctor He Told Me What To Do!
He Said That:
Ooh to the eeh the ooh the ahah to the ting to the tang the wallawalla bingbang
Ooh to the eeh the ooh the ahah ting tang wallawalla bingbang"
By the tenth airing, even the parents had enough and decided they'd rather tolerate screaming from their kid than another round of helium-infused rodent voices.
Another day of doctors rounds, more puncture marks - but I finally got a chemo schedule today. Every Monday through March 1st, at the crack of dawn. Had some nausea after the first treatment, but so far, so good...
Friday, January 22, 2010
Got my chemo schedule. I'll be on Gemcitabine and the new drug. Finally!
The bad news is - the dreads are going to go. I'll be rocking the funky hats and head scarves.
The only reason chemo isn't scaring me yet is because my new teacher has given out about 20 assignments in the past week.
So for now, I'll concentrate on "best practices of the AU website" and compare and contrast to the competition.
Let the games begin!
Thursday, January 21, 2010
After a day of tests at Johns Hopkins Wednesday - I waited for the phone call - the one telling me when I would begin chemo, Thursday or Friday. Instead the nurse called and said they don't have the test results in yet - my Bilirubin was above normal last time and they want to wait until they have the labs in before starting chemo. Would Monday do?
I pitched a fit - to no avail - pointing out that both my husband and I have to schedule time off our jobs for this. "Well, I'm sooo sorry for the inconvenience," she said before hanging up the phone. Or did I hang up first. I was too angry. So are my labs bad because I'm not receiving treatment? I have an appointment tomorrow with the Alexandria oncologist. I'm tempted to let him takeover.
I'm also well beyond being a good patient and am angry, sorry for myself, and tired of smiling and keeping a stiff upper lip. F$%^ this!
Tuesday, January 19, 2010
What could have been a sad and somber trip to Huntington, WV culminated in a joyous homegoing for my sister-in-law Karla. There was no funeral service, just a gathering of friends and loved ones.
My step-daughter wrote a wonderful eulogy, which included,
"Friends and family will most miss her infectious laugh and joy of life and encourage others to come celebrate her life between 2 and 4 p.m. Saturday, Jan. 16, 2010, (leaving plenty of shopping time afterward) . The family would like to thank the supportive staffs at Ohio State University medical centers and Hospice of Huntington. In lieu of flowers Karla would probably appreciate donations to The Arthur G. James Cancer Hospital in Columbus, Ohio; the Joan C. Edwards Comprehensive Cancer Center in Huntington; or, The Emogene Dolin Jones Hospice House in Huntington."
All of this left me more determined than ever to fight this. My husband and his family deserve a break from grief. We also bought a Powerball ticket while in Huntington because we figured one family can't have all this horrible luck without some occasional good luck!
Okay - the human pin cushion is back in DC. Had a PET scan today and they lied - there were no puppies! Then they took more blood. Back tomorrow - still don't know which drug protocol I've been assigned. Sigh....
Tuesday, January 12, 2010
Met with the clinical trial staff at Johns Hopkins today. Gave more blood, gave more CT scan. Damn. I've had more MRI's, CT scans and EKG's in the past 2 months than I've had in my entire life!
Chemo starts next week, either Wednesday or Thursday. Depending on which trial I'm in, I may or may not lose my hair. Nelly was disappointed - she already had a nice wig picked out for me.
I've been avoiding some of the pancreatic cancer web sites. As my gangsta Aunt sometimes says, "you saw it, but you didn't see it."
For the time being I'll just focus on being positive, soak up the love coming my way, and take it one step at a time....
Monday, January 11, 2010
Karla died today. She was such a force of nature and so full of life that its hard to believe. Steve flew to University of Columbus Medical Center last year to provide a bone marrow transplant - and for a while the news was so good! But she went into decline just before Christmas. There is nobody like her. Thank you, Karla, for introducing me to the joys of Gabriels, "real" pepperoni rolls, and Huntington Yard Sales!
Goodbye also to Marcia Slacum Greene, whose memorial service takes place Tuesday. I'll miss it, as I have to trek up to Johns Hopkins for tests and paperwork. Steve says he's holding up fine, but I don't believe him for one second.
Sunday, January 10, 2010
Heard from Johns Hopkins late Friday afternoon - They want me to come up on Tuesday and check in with the nurses, sign papers, etc. Still no schedule on when I start chemo.
Lots of friends checking in and just letting me know they have my back. It means a lot. I'm angry, disappointed and just plain frustrated. Every time I see the commercial with the theme song, "When I grow up I want to be an old woman," I just want to throw something at the set.
I'm sending prayers to Huntington, where Steve's sister, Karla, is now in hospice.
Tuesday, January 5, 2010
Johns Hopkins says Cigna has okayed the clinical trial. They'll let me know when I can start.
The bad news is that Steve's big sister, Karla, is still hospitalized in Columbus, fighting cancer.
And, Marcia Slacum Greene died of pancreatic cancer today. One of the nicest ladies I've ever met.
Trying to stay strong.
Still waiting for the go ahead from Cigna for chemo treatments at Johns Hopkins. This needs to get going already.
Also, went back to work yesterday. Turns out I don't have as many sick days as I thought. As of January 1, 2010, all of last years sick days went away and I start the New Year with 7. 7 sick days. The day went fine, in spite of a few "Dead Man Walking" looks of pity. Pace yourselves, y'all. I'm back through Thursday.
Saturday, January 2, 2010
Well I definitely started the New Year with a fucked up attitude. But after lying in bed for days on end wearing the same sweat pants, I figured that wasn't working for anybody. We went to a friend's house for New Year's Eve games (dominos, bid whist). Although I was still wearing the sweats it was a start. Mom insisted I check out the "blue moon." A full moon that occurs twice in one month. It wasnt blue, but it was beautiful.
New Years Day went to another party - this time I managed to pull together an outfit - nothing fits anymore, but what the hell - I made the effort. It felt good to get out and good to see friends - particularly one who wants to talk to me about her cancer ordeal. So for now, I'll try to stop the pity party.
I did hear from Johns Hopkins - we start the chemo clinical trial AFTER my health insurance company approves it. WTF.