'So, my job is to live that long ... Period.'
Loved ones rally around Marge Whaley as she muses on a future - maybe five or 10 years away - when no one will die from her cancer.
By MARY SPICUZZA
Published October 8, 2006
LAND O'LAKES - Coping with breast cancer inspired Marge Whaley to create a new word.
Taxol is a chemotherapy drug.
"Taxoled" means being spent, exhausted. Crying at the drop of a hat.
But Whaley, 65, has found strength in everything from the hats friends gave her to a post-chemotherapy party with her family.
The 13-year veteran of the Pasco County School Board began a journal the day her doctor called about the lump. She has agreed to share her thoughts with the Times in an effort to raise awareness about the disease, which affects one out of eight American women.
Monday, June 19
Had my first Taxol and Herceptin therapeutic for metastatic breast cancer treatment on Thursday. I had such bad anticipatory nausea on the way there, had to take my prescription drugs. The time was much shorter, and I was in a room with other people to talk to, which was nice. The steroids kicked in on Friday and I was Wonder Woman, doing everything. On Saturday, had the best hat shower ever, more that 40 people there and it was so lovely and so affirming and brimming with support, I was almost happy to have cancer to experience it.
Wednesday, June 21
The joys of cancer! I think every single time my article has come out in the newspaper, I have heard from people I have not heard from in years. This time was not different. Breast cancer touches so many lives! I have my "group," both people I know fairly well, and those I know through e-mail. I worry so about the young women, now facing horrible second diagnosis. Yet I wonder if young women ever think this can happen to them!
Saturday, July 1
Yesterday a banner day. I cannot be in the sun at all and mornings are when I have my energy so finally went to the pool after dinner. Bounced around a lot and talked to people and did swim one lap, bald. Not so hard to do after all.
I am tired of cancer. I want it to go away. Period. I don't want to go to chemo tomorrow. Or any other day. I just want to be done with this. I don't want to be brave, or positive or strong. I just want to cry and say, Why me? I don't want to be anything for anybody and yet, as I type these words, I would not want my husband to hear them. I would just like to be a wimp, for maybe a weekend. And please let it be on a deserted beach somewhere where I CAN be in the sun.
Friday, July 7
I was just reflecting on, "there must be some good news somewhere" when I remembered a phone call today that ended with the caller saying, "I pray for you every morning." I will hold that close to my heart tonight.
Monday, July 10
Went to Sam's Club and my mom's, where I avoided telling her I did not feel good, but by the time I left, was used up! A new word - I think I am "Taxoled." Hopefully, tomorrow will be a better day.
Monday, July 24
I HATE this. No energy, no desire to do anything I normally do. I can hardly do the stuff I feel I need to do, like get dinner on the table. I cry at the drop of a hat. Mostly, I just sit and stare at walls. And I have eleven weeks of this to go!
Thursday, July 27
I have to be careful not to take this out on my sweet husband. I find myself getting miffed if he hasn't done something I think he could have, like clean up the dishes in the kitchen sink. I don't think he has any idea how lifeless I feel. But when people say, "How are you?" I just say, "Fine!"
Saturday, Aug. 5
Getting new tiny white hair around my face and where hair receded at side of front. Not much in front but with the rest of my head covered sparsely with "old" salt and pepper hair that stayed and is now over an inch long, my head is pretty much covered. Still will wear hats for a while.
Tuesday, Aug. 8
It is hard to describe "rubber legs." They just don't work very well for very long. So you find yourself doing something like making the bed and taking a shower and getting dressed, then sitting for 45 minutes. Then I might clean up the kitchen from breakfast and throw in a load of laundry and thaw something for dinner: back to the chair and the book. I ALWAYS take a 35- to 45-minute nap. And then try and get some calls made and desk work done.
Wednesday, Aug. 23
Monday was the absolute worst day since I started chemo, except I had no nausea. I also had no energy. It hurt to walk anywhere, I had abdominal cramping most of the day and I was more than happy to go to bed. Two more Mondays, I keep telling myself.
Monday, Aug. 28
We had gone to potluck last night and someone was celebrating an 80th birthday. Any other time, I would have simply clapped and thought nothing about it. But at 4 a.m. this morning, when I could not sleep, I was wondering if I will live to be 80. That's the thing about cancer, you never know if or when it will come back. And I have met so many people now who have metastasis - so, so many. The thought did not depress me, it was just ... there. And it always will be.
Saturday, Sept. 2
My granddaughter had five teeth pulled Friday and I was waiting for my husband to get back from early voting when the phone rang. My daughter was worried about Courtney's mouth, said it was very red and puffy. Well, the "nurse" phase kicks right in and off I go with my flashlight etc. I noticed our other car pulling in as I got there and thought my husband had decided to visit before he came home. Then up comes my son, saying, "Come on in, Mom!" My other daughter was there and her family and my Mom for a celebration of the end of the tough chemo! I cannot put in words how much that meant to me. Not just the wonderful food, but that they are there for me every minute, cheering me on!
Friday, Sept. 8
Have not written because it has been SUCH a rotten week. Had a death in our neighborhood and went to the viewing and did food for after the funeral. He was so young - 48. A victim of cancer that he had when he was 18 and now radiation sickness. Also a board meeting and workshop. So, pushed the envelope a bit, and just exhausted the rest of the week.
Monday, Sept. 11
I am disappointed that I am not starting to feel better. For some reason I thought today would be the turning point, but still have the darned rubber legs. Have been reading e-mails, and another person died from breast cancer. A dear friend is very, very ill from complications of chemo for lung cancer. I have stuff to do and no energy to do them. Thank goodness we will be out of town for 3 nights next week. I am leaving this cancer AT HOME!
Monday, Sept. 25
I did have a nice visit with Mom. She had an article for me about advances in breast cancer. It talked about Herceptin, and it hit me that for many, many women, this type of cancer - Her-2/neu - was a death sentence because of recurrences. I still am at considerable risk, but they think in 5 to 10 years, no woman will die from this type of cancer. So, my job is to live that long with no recurrence. My job is to lose this weight and to adopt and stay on an exercise program. Period. Today is the first day of the South Beach diet.
Friday, Sept. 29
Big news: The diet is going well and I have lost six pounds in three days - mostly fluids I think. I knew I was retaining fluids during Taxol. Also took about a half-mile walk outside today and boy, am I out of shape - will have to build up again. I feel pretty good most days, but have so much board work and other stuff going on, little time even for reading.
Times researcher Carolyn Edds contributed to this report. Mary Spicuzza covers education in Pasco County. She can be reached at (813) 909-4614 or toll-free at 1-800-333-7505, ext. 4614. Her e-mail is firstname.lastname@example.org.