Thursday, October 20, 2011
Many of you know that I've been doing battle with my HR Department since August - I've run out of sick leave, so I requested donations. I filled out the forms - had my doctor fill out the forms - then sat back to wait. And wait. And wait. Sent an email query, which went unanswered. Left a voice message. No response. In late September, a co-worker brought up the issue of leave donations at a staff meeting. Later I was told I had turned in the wrong forms.
Finally, in October, a new HR person was assigned my case, and - she got everything worked out that day. Still don't know why the first guy ignored my existence. Another co-worker walked the leave donation forms over to HR a week ago. As of the last time I checked, the leave donations have NOT been credited. Sigh....
On another note, Steve Jobs and I did NOT have the same kind of pancreatic cancer. Mine is worse. But, apparently unlike Steve, I'm throwing everything but the kitchen sink at it, so keep your fingers crossed. At my last visit, Doctors told me my tumor markers were up (only slightly) and they made me meet with a Dietician. So if you see me eating sugary goodies, feel free to slap it out of my hands. (or just eat it yourself - waste not want not)
Steve Jobs wasted time on alternative medicine
In other news, for some reason, my medicine is now readily available. The shortage is now over. Wonder why?
Finally, Tuesday, October 25 is National Dial Congress for Progress Day! During this one-day event, volunteers are asked to make 1 to 2 phone calls to their Members of Congress who have not yet co-sponsored the Pancreatic Cancer Research & Education Act. All you have to do is reserve 10 minutes on October 25 between the hours of 9am to 5pm ET to participate. There's more information on the Pancreatic Cancer Action Network.
Tuesday, September 20, 2011
H.R. 2245 would require all drug manufacturers to give the FDA at least six months’ notice for a discontinuance or interruption in drug production, or face fines. It would also require the HHS Secty to notify drugmakers if a drug is vulnerable to a shortage. Sen. Klobuchar has introduced a companion measure (S 296) in the Senate. The current authorization of the FDA’s drug review process expires in fall 2012, Sens Harkin and Enzi have pledged to mark up the reauthorization measure by early next spring. (CQ Today 9/13/11)
Monday afternoon, I received the phone call from my nurse telling me to throw out the Xeloda, I'm back on 5FU as of Tuesday afternoon - which means 3 days every other week of lying around on infusion therapy. I have mixed feelings about that. On one hand, I was mobile on Xeloda - went back to work the day after chemo. On the other hand, its turning my hands and feet black - and no one has any idea if its working as well as the 5FU.
So I'm back to watching "Judge Judy," and feeling yucky. On the other hand, 5FU has worked wonders so far, so I'll suck it up and welcome Nurse Hung back with some brownies.
Theme for Today's drive to Johns Hopkins -
Nelly's driving me to JH again. I'll need your prayers!
Friday, August 19, 2011
Have you ever gone out for a steak dinner only to be told that they'd run out? But you can substitute a hot dog.
Yeah, that was my reaction when I was told that I have to do another round of chemo, Oh, and there might be a shortage of the chemo drug. And, if I can't obtain it, here's a prescription for another drug that might work as well but has lots of side effects.
No one can say why there is a shortage. No one can say when it will end.
According to the New York Times, More than half the recent chemotherapy drug shortages have resulted because government or company inspectors found problems like microbial contamination that can be lethal on injection. Others have occurred because of capacity problems at drug plants or lack of interest because of low profits, according to the FDA.
Dr. Robert Mayer of the Dana-Farber Cancer Institute in Boston said, '"One could say that substituting Pepsi for Coca-Cola doesn't make a difference. Maybe it does and maybe it doesn't, but more often it might be substituting 7-UP for Coca-Cola, and that might make a difference."
My doctor gave me a prescription for a pill to substitute for the chemo drug, 5FU( fluorouracil). The side effects of the pill are pretty radical - blisters in your mouth and on your hands and feet.
Another example of letting the market place decide who lives or dies, rather than the so-called government death panels. Gee, who do I trust more with my life?
UPDATE - Johns Hopkins telephoned today (Aug 22) to let me know I would NOT be receiving 5FU because of the shortage. They do not know when the shortage will end. And, please let them know if the side effects from the replacement drug (Xeloda) make my life a living hell. Cheery-bye!
UPDATE #2 - (Aug 23) Chemo session ended just as earthquake hit. Steve and I were grinning at each other, "earthquake! Awesome!" Then saw staff running from the building freaking out. Tried to talk about paperwork with my nurse but she was too busy grabbing her purse to evacuate. People standing outside the hospital under a glass and metal atrium. NOT a good idea.
UPDATE #3 (Aug 24) Got the new meds and started today. Same thing - tired and nauseous. Sigh...
On a happier note, I saw my former nurse, Roz, while eating lunch in the cafeteria at Johns Hopkins last week. She looked happy to see me and blurted out, "you look good!" Not in that approving-sistah-to-middle-aged-sistah-kind of way, but in the startled "your still here?" sense. I took if for the compliment it was. I'm still grinning.
Monday, August 8, 2011
Which is worse?
- Summertime chemo
- Heat Wave from hell
- A tanking 401 k
- Partisan hostage taking - not only on Capitol Hill but across the country
- No summer vacation (except for family reunions)
- "Cowboys and Aliens"
No, its Congress. Definitely. And at least I don't live in Wisconsin.
The chemo started out bad but, finally, the nausea stopped. My appetite went away, but came back with a vengeance. I discovered the joys of Ginger Calamari at "Zest" and made "Banana Pudding Cupcakes" for the family reunion. Also smuggled home a bag of pepperoni rolls from Westbygawd. Had what I hope is the last round this week and spent a lot of time sleeping or watching "Judge Judy." (whoa-that can't be good)
My 401 k, well, since I can't retire until I turn 90, then it has time to recover. And, when the stock market crashed, I immediately bought stock for the grandkids. I Love Sharebuilder.com. I've been using them since the demise of the last investment club I belonged too.
My family reunions were a hell of a lot of fun.
Mom's side of the family endured 104 degree temperatures and still had a great time in Maryland. (Thanks to air conditioning and a great party) During the trip to West Virginia we participated in the annual "Cornhole" tournament, were attacked by a killer bat in the hotel lobby and had the joy of shopping at the Coldwater Canyon Outlet and Gabriels.
And, "Cowboys and Aliens," well it wasn't the best movie I've ever seen, but it wasn't the worst either. So, the summer didn't suck! At least, if you can ignore the news every now and then....
Friday, June 24, 2011
Cancer is like a bad boyfriend. After smacking the shit out of you, he promises to do better, goes to AA and lulls you into a false sense of complacency. Then....
Three weeks ago, my Doctor called - he was concerned that my last blood test showed an increased level of so-called "cancer markers". He suggested one more blood test before my regularly scheduled meeting with him on Friday. Well, today he decided to put me back on chemo. My "cancer markers" are up, and, even though he didn't see an increase in the tumor size on my CT scan, he thought it better to be safe than sorry. Party's over. But, damn, I had a good time during my 6 month break!
And, you know me - the glass is always half full. There was a reason that deer took out our van, forcing Steve to buy a sedan. Now we'll be traversing the highway to Baltimore in a car that doesn't waste as much gas and has fully functioning air-conditioning! The money I put aside for the trip to California that I now wouldn't be able to take? Paid for the car. See? Master Plan. 100 degree DC summer with monster humidity? Time to cut my hair again anyway.
I confess to having had my fingers crossed, hoping to be able to see Nelly graduate. I did it. So, I'll live up to my part of the bargain and go quietly back to chemo. Although I will confess to stuffing my face with onion rings and a DQ blizzard before I have to turn myself in next week. Coping mechanism. Really. I am now officially back on celery and salad.
Back to the Master Plan... Last weekend, I clipped the newspaper before Steve and I started our day of errands and found a coupon for a discount breakfast at "Friendlys" in Burke. Sitting across from us at the restaurant was a teenager wearing a purple tee-shirt advertising the "PurpleStride DC." I was astonished and asked her about it. Turns out we were missing a walkathon for pancreatic cancer. Tuesday, June 14th was also the 5th Annual "Pancreatic Cancer Advocacy Day"on Capitol Hill. I was gobsmacked that all my internet research hadn't led me to the Pancreatic Cancer Action Network. So my new bargain is, if I'm healthy enough next Spring, I'm putting a purple shirt on and I'm walking the walk!
Saturday, April 30, 2011
Anyway, most recent Johns Hopkins visit was much like the last. Went in, had my CT scan, and waited for the Doctor. He bustles in, looks me over and says, "well I guess we'll keep you off chemo for another month or two. Come back in late June and we'll see how it goes." After he leaves, Steve and I look at each other. "What did that mean?"
Well, I guess I'm not cured, but I guess I'm not getting any worse. Reprieve!
I have two new obsessions - cleaning out the house (no more clutter) and "Game of Thrones" on HBO. Its been described as "Lord of the Rings" if it were produced by "Playboy." Jason Momoa (Khal Drogo) is fairly AWESOME! He is, apparently, Lisa Bonet's boy toy.
Someone very dear to me once said that they admired me for continuing to work while on chemo - and that its important to keep busy. What actually kept me going was a quote from one of my favorite movies, "A Family Thing". "Being happy ain't nothin' more than havin' something to look forward to. "
I'm looking forward to college graduations, a huge picnic with friends in Rock Creek Park, Switch and Bitch, a family reunion in Maryland and another in West Virginia, chick flicks with friends.
I'm happy. Hope you are, too.
Wednesday, April 6, 2011
"It's so strange to me that something so horrible could bring about so many blessings"
The "Today Show" this morning featured Elisa and Nathan Bond, a young couple battling cancer . They've been married 5 years, have a toddler - she's been diagnosed with Stage IV breast cancer and he's got Stage 3 rectal cancer. While it should have been a depressing story, I was inspired by their spirit. They made the decision to celebrate each day. Like me, they blog because its cathartic and an easy way to keep in touch with family and friends. And, like me, they have a wonderful network of friends and family to see them through.
Life is like a big pot of gumbo (food obsession rears its ugly head). Its spicy, delicious and every now and then you have to spit out a crawfish head, but you keep eating.
I look forward to going to work (lot of crawfish heads, but who cares?) I'm walking Duncan everyday and trying to stick to the diet - I actually ate only HALF a lemon cupcake yesterday. And it was a damn good cupcake too.
As far as I'm concerned, everyday is Mardi Gras. And who doesn't like a religious festival with parades, great food, alcohol, and people who throw jewelry at you for showing your ta-tas? Methodists can't begin to compete.
I'm tucking some Mardi Gras beads in my purse today, just as a reminder.
Friday, March 4, 2011
(Great Sand Dunes National Park, Colorado)
You know the old saying,
"Want to hear God laugh? Just tell him what your plans are."
A year ago, I was sick, tired and sick of feeling crappy. I asked God to just let me live long enough to see Nelly graduate.
Today, my doctor told me that the tumor had shrunk - again, and said perhaps I need to keep closer track of my diet and exercise.
He also said to come back in April and we would see what's what. That was actually the last thing I thought I'd hear. I thought my luck had run out. But on second thought, maybe I should buy more lottery tickets. Enough of the stinkin' thinkin'.
My daffodils are beginning to grow, Easter is coming, and Nelly graduates in May. I'm living life one day at a time - and thinking maybe I should keep putting money in my retirement account. You just never know....
Monday, February 7, 2011
I'm still on break. Having a good time, seeing movies. I went to the Chinese New Year's Parade with the grandbabies, and, while I nearly froze to death, I didn't get tired. Woot! I have periodic blood tests to make sure things are still in a holding pattern, and I don't go back to Johns Hopkins until early March.
There was a nice tribute on NPR to one of my party buddies from my wild, mispent youth -
Leon Wynter died recently of brain cancer.
Besides Red Velvet Cupcakes, know what makes me happy these days? Raylan Givens is back! "Justified" returns to FX on February 9. It's based on Elmore Leonard stories ("Out of Sight", "Get Shorty,") and there's a tiny "Justified" fan club at work. I'm currently listening to an Elmore Leonard book-on-CD, "Up in Honey's Room."
"Community" has also returned. I know. I AM a simple organism....
Friday, January 7, 2011
My latest CT scan showed no growth, I'm eating like a horse (would that it really were just oats and hay) and I'm feeling perky. Also, the chemo has caused me to lose feeling in my fingers and toes and it would be nice to be able to manipulate a button again. Like Grace Makutsi, I used to take inordinate pride in my ability to type 55 wpm. (97 percent!)
Unlike Aretha Franklin ("my health problem has been resolved"), I'm not cured. But I'm still here. Maybe coming off chemo will make me less of a bitch. Or not, who am I kidding?
Finally, must give a shout out to Anne Francis, "Honey West," who died of pancreatic cancer last week at the age of 80. I adored her! "Honey" was the first female private eye on TV -owned her agency, used high tech gadgets and karate, and had a man-hating pet ocelet named "Bruce Biteabit." Did I mention the custom built convertible "Cobra" sports car? RIP Honey.