Ellen Foley, editor of the
Wisconsin State Journal, would give anything to attend the
ASNE convention on April 12. She loves the editors' organization, she's running for re-election to the board, and she could bask in congrats from her colleagues because her paper was a
Pulitzer finalist this year. But the convention will go on without her.
Foley would give
anything to be there -- because it would mean that all is well at home in Madison, Wisconsin. Things aren't well at all. Not since February 5, when her husband Tom Foley entered what Ellen calls Cancerland. And he's in its toughest neighborhood, with a diagnosis of
diffuse large B-cell lymphoma that has snaked through his system and trespassed into his brain.
|
by Tom Maniaci
Ellen and Tom Foley |
I see this happy picture of Tom the lawyer, therapist and golf guru with his wife Ellen the journalist, just about every day.
It awaits me each time I get an e-mail from a website called
CaringBridge.org. This
non-profit site is a godsend for families dealing with complex medical issues.
The CaringBridge message tells me the "tomfoley" site has been updated. In one click, the picture of the snuggling Foleys greets me, just as it has smiled out to others for more than 16,000 times. That's how many visits the site has logged since February. Family and friends from around the globe, journalism buddies of Ellen's, we're all somewhere in that number.
Ellen pens most of the entries and her writing is remarkable. Her posts are both raw and poetic, clinical and comical, personal and universal. With a cancer so ugly, a chemotherapy and radiation regimen so excruciating, and lives so upended -- there is, for Ellen, no sugar-coating. Readers learn about rashes, mouth sores, retching, weight loss, infections, headaches, ER runs and quests for information on clinical trials.
Let me share an excerpt from one entry with you. Note that Ellen is filing in the wee hours of the morning.
THURSDAY, APRIL 03, 2008 01:24 AM, CDT
Tom is back in the hospital unexpectedly. His fatigue turned to severe lethargy Wednesday evening. His temperature at 101 degrees indicated some sort of infection. After the requisite phone call to triage at about 8:30 p.m., then the call back from the fellow, we were off to the ER...
Just hours earlier, he had fallen asleep at the dinner table. It was one of the weirder experiences in Chemoland. He just quietly put his soup spoon down, dropped his head and began to sleep. No fluttering eyelids. No "I need to lie down". No "excuse me here for a minute." Just asleep.
Tom, who routinely got up at 5 or 6 a.m. before cancer, slept until 2 p.m. yesterday (Wednesday) but rallied when some friends came to visit about 3:15 p.m. I went to work and by the time I got home about 7 p.m., he was asleep again and not sure he could get up to eat. It was the one time in all this that I thought that I would need to call an ambulance. He was breathing with such effort that I thought maybe he was having a heart attack...
We talked in the ER as the antibiotics were taking hold how hard this would be if you lived outside Madison in a little town without a community hospital. What do those people do? What do people do who don't have someone like me insisting on taking your temperature at the dinner table and putting you in the car even after you tell them you are not sure you can make the steps? We feel so lucky to have each other.
So this is the Chemo 5 side effect. Fatigue, throat pain, increased headache, labored breathing, ankle pain. He's now back on our home floor at UW Hospital in a rather nice room with the nurses we love and the docs who know our story. Infection is a concern because with his immunity shot down by Chemo 4, the docs don't want any infection starting to float around in his blood stream. You can Google this. I'm not going to go into the bad things that happen with that.
"I hope I am going to get well," Tom said to me a bit plaintively as I was getting ready to leave about 12:30 a.m.
"Oh, you are going to get well," I said emphatically.
I can feel his concern that this better be worth the effort. It's not anxiety really. It's just the amount of effort that we are putting into getting him through chemo and then weighing the risks of radiation. I know it will be worth it. But after midnight with a blanket draped around his neck to keep him warm until his XXL hospital pants were delivered and with lines running from both arms, I can understand how he might question the surreal process we are now halfway through.
* * *
I asked Ellen's permission to write about all this for Poynter. Cancer
robs families of control, and I wasn't about to take more of hers or Tom's away by publishing against their wishes.
Ellen said she'd be "honored" and in an e-mail, shared her thoughts about the CaringBridge site. It enables her to broadcast updates to family and friends, whom she refers to as "Team Foley." In return, they send messages of encouragement, jokes, cancer coaching, links to medical resources -- and love. This traditional newswoman understands she's experiencing web-based social networking at its best. She wrote me:
The CaringBridge has been a wonderful tool for me. Then it turned itself into a community. Some days ago I didn't post because I was running around trying to find a second opinion. People on the guestbook who didn't know each other started emailing each other seeking info, worried that something terrible had happened. They tell me they want to physically meet each other and they are all Googling each other. I'm sure there's some internet lesson here and there is a journalism issue here. Team Foley wants news. They want to know about Tom's bowel habits for heaven's sake. They also want to talk to each other about it and feel better about his illness when they do that. Some of them are talking on the guestbook. Some are talking online via email. Some are talking face to face. What powerful tools these are...
While it is very sad that Tom is very sick with a rare cancer that may not have a cure, the CaringBridge.org tool has helped me, the people who love us, other cancer patients, our nurses and doctors understand how we think and possibly all of this helps lots of people including me. I find the responses incredibly helpful to keep me going and as the cheerleader of the family, it's hard to keep going when you also feel like crap...
* * *
There are leadership lessons in this ordeal, something else Ellen is teaching Team Foley members. She's written about sharing love and vulnerability, about learning to accept help and about dialing down a workaholic passion for the newsroom as she manages her family's cancer journey. She's written about telling Tom she won't go to ASNE this year, and his concern about her missing an event she loves.
Here's one last important thought she shared in a separate e-mail to me as I asked her for information for this column. She sent from the hospital, of course:
I read
Arlen Specter's book and part of
Lance Armstrong's. It made me think how dangerous it is for these powerful people to advise chemo patients to work, work, work during a health crisis. Lance was taking 16-mile bike rides and Arlen was working 12-hour days in the Senate during chemo. Tom can't do that but I can. Leadership doesn't stop when you enter the hospital or step back from work to help your husband at a difficult time. It just leaks out somewhere else. In my case, it's CaringBridge.org. I can't help myself!
(
Note: I know thoughtful readers of this blog might want to sign on to Team Foley. On the left side of the CaringBridge home page, you are asked for the name of the site you wish to enter. It is "tomfoley." Posting messages requires free registration.)
If anyone would care to visit my husband's site on...
