My 90 seconds of fame

I've been an avid reader of Leroy Sievers' blog "My Cancer" (see the link on the right side of this posting) since July - about two weeks after I was first diagnosed. I've found it to be the best support group that I could have asked for as a patient. As a reader and frequent commenter, I have joined a tremendous on-line community of cancer patients and their care-givers. About a week and a half ago, I was contacted by Neva Grant, who is one of the producers of National Public Radio's Morning Edition radio program. They are preparing a story about Leroy Sievers and his blog as part of a story they are doing about a Discovery Channel documentary on cancer that will be aired in early May. The radio story will feature selected excerpts from the blog, along with some of the comments, as read by the commenters. I was honored to be asked to read several of the comments that I have submitted for use on the radio story. The picture above is me at the studios of radio station KUOW (our Seattle NPR affiliate) yesterday, doing an interview with Neva Grant and recording the selections that they will use for the program. I have a difficult time recording my out-of-office voice mail message every week (for days I go in for treatment), so I was a little nervous. I had to read each selection about three times before I did it slow enough to be good radio material. I'm not sure how they'll use my excerpts, but I'll be interested to hear the voices of some of the other regular commenters that also participated - it will be nice to associate voices with commenters. I'm also glad that they didn't want a picture - the Erbitux rash is in full blaze right now and I have what's gently called a "face made for radio" which thankfully doesn't show in the picture above.

I'm looking forward to seeing the Discovery Channel program. Leroy worked with Ted Koppel on Nightline, and Koppel wanted to include Leroy's battle with cancer as part of the documentary. They followed him through a treatment session and interviewed his oncologist, caregivers, family and friends (see link http://www.npr.org/blogs/mycancer/2006/11/words_that_cut_through_the_noise.html. ).

I'm not sure of the exact date when the Discovery documentary will air, but I know it will be in early May. The radio story is set to air on May 4th, so listen to Morning Edition on your local NPR station. Check their program guides to find out when they run the program - usually anywhere between 5:00 AM and 9:00 AM, with many stations repeating the program at least once and sometimes twice during the time slot. I'll let you know if the schedule changes.

A final note for the week. I never thought that I would ever have anything in common with White House Press Secretary Tony Snow. The announcement this week that his cancer had returned and metastasized to his liver and possibly elsewhere hit me just as hard as the recent news of Elizabeth Edwards' cancer recurrence. Regardless of your political persuasion, please include both of them in your thoughts and prayers - they have a tough fight ahead and could use all the help they can get.

Don't give up, don't ever give up...

A little late in getting this week's posting out - got distracted working on taxes for Uncle Sam. Another big upside to getting cancer - maybe now I can finally get that medical deduction in this year's taxes. OK, maybe that's not such a great thing, but the list of advantages to having cancer is really pretty short. There have to be more advantages besides getting out of jury duty, taxes, and getting out of crummy business trips - otherwise why would people keep getting cancer anyway? Awright, I'll be honest - I can't really recommend it.

I had a new marker number count last Thursday, which Dr. Gold was good enough to share with me personally on Friday (what can I say about a doctor who makes the time to make a call to his patients - a rare breed). Unfortunately, the number didn't really change from the last one two weeks ago, so we're still at 13. He still says I'm the man, and that we'll keep on with the Erbitux treatments until we get down to zero. We'll get a new PET scan (which will provide hundreds of possible images for me to tinker with) on April 17th, and hope that the collection of glowing spots (indicating live tumors) on the scan has disappeared or shrunk to much smaller spots.

My hero this week is Elizabeth Edwards. I was greatly saddened to hear that her cancer had returned, and in a far more serious and "incurable" form. For those of us in this club, it's tough to hear that we have another new member, and perhaps even tougher to hear that someone who we thought was cured is back in the club again. She and her husband made an extremely difficult decision in announcing her illness to the public, and perhaps more surprisingly, that they would continue on despite her illness. For those of you who don't have cancer, it may be hard to comprehend why a person would willingly commit to something as grueling as a presidential campaign after being diagnosed with cancer. The campaign trail is tough enough for a healthy person, but seems almost impossible for someone undergoing the rigors of chemotherapy. It's going to be extremely difficult. So why do it? I think that she explains it pretty well in this quote:

"You know, you really have two choices here. I mean, either you push forward with the things that you were doing yesterday, or you start dying," she said. "If I had given up everything that my life was about, first of all, I'd let cancer win before it needed to. You know, maybe eventually it will win. But I'd let it win before I needed to."

That's it - we're just not ready to start dying yet.

Elizabeth's spirit reminded me of another cancer patient who put it more simply. This week's picture is of another patient who wasn't ready to give in to cancer - former NC State basketball coach Jim Valvano, who died from metastatic adenocarcinoma in 1993. The title of this week's blog is his advice from the speech he gave at the 1993 ESPY Awards and the motto for the Jimmy V Foundation for Cancer Research - "Don't give up, don't ever give up". It's the same message and one that's worth repeating often.

Things could be worse...

...you could have an ice-axe stuck in your chest. I debated on how to title this picture. "America's Funniest Home Surgery" didn't quite make it. Nor did "Change in health coverage encourages lowest cost provider for surgeries". The real story behind the picture is my annual stint as a volunteer "victim" today for the Tacoma Mountaineer's back-country first aid class. They need realistic victims for the final exam and I've always wanted to be the ice-axe victim - it's clearly one of the best props, and it's just a surreal picture to see someone calmly drinking a cup of coffee with an ice-axe lodged in his chest. They provide all the gory makeup and lunch, and we get to moan and thrash until the class responds to the accident scene and tries to sort out the mayhem. I think that I've learned as much by being a victim as I did when I took the class.

But this prop also has a secondary joke behind it, which I will complete on my next visit with my oncologist. At my very first visit with him last July, he made it very clear that my days of using the ice-axe were over for awhile and maybe forever. To emphasize the point, he jokingly threatened that if he heard that I had an ice-axe in my hands while he was treating me, he would personally impale me with the axe. So Thursday, I'll show him this picture and tell him that someone else beat him to it.

Maybe most significantly, it was a good mental boost to be able to get out and finally do something after a long sedentary winter indoors. I felt great physically and didn't tire out after a full day outdoors with this exercise. I'm optimistic that this is a first step in getting back my old life. I know that I've got a ways to go, but buoyed with the continued success from the Erbitux and just having a great day outside, it feels pretty darned good to be alive.

Eureka - it's still working!

The Erbitux is still on the job. Dr. Gold called me yesterday morning, bright and early with the latest CEA tumor marker numbers. Drumroll please...... 13! Now officially the lowest marker number so far, we are making good progress and a zero number is on the visible horizon at this rate. I'm feeling pretty good about it, even if the Erbitux makes me a miserable welted and itchy mess - the progress is worth it. I'm on a temporary honeymoon from the welts and itch right now as the steroids I got with treatment on Thursday keep the Erbitux side effects in check, or at least for a few days anyway.

Since the last posting with good Erbitux news featured a waterfall picture, I thought I would continue the trend - sort of like a keeping a pitcher's lucky streak going. This week's picture is from a hike I took to Comet Falls in Mount Rainier National Park. This image popped into my head early on Friday morning (approx. 3:00AM). When I get the steroids (they are for nausea relief), I almost always wake up between 2:00 and 3:00 the following morning and then stay awake for several hours, until I'm too groggy to stay awake. My mind races for hours with vivid images and insightful thoughts, none of which seems so impressive when I try to recall them in the morning. At least I remembered this picture and a few memorable moments from the hike. I can't wait to get out again and see it in person.

One of the therapeutic treatments that happens at the clinic has nothing to do with the drugs and medicines that are administered there. It's the opportunity to interact with the other patients in the waiting rooms. Some of us are regulars and we get the chance to catch up with how our treatments are progressing (or not progressing) while we wait. We compare notes on treatments and side-effects. We congratulate each other on how fabulous we look, whether true or not. Others are "newbies" who still have the "deer in the headlights" look in their eyes as they carry the hospital-issued looseleaf binder given to all new cancer patients. The balding veterans welcome the newbies to cancer-world and pass on what they know about the doctors and drugs they've been treated with. I guess I fall into the "veteran" category now, as I've had the opportunity to see former newbies "graduate" and head towards remission or surgical options. I had the opportunity to meet a woman last Thursday who has mesothelioma - lung cancer from asbestos exposure. While she's known about the damage to her lung tissues for some time from exposure to asbestos as a child (her father was an asbestos worker in a shipyard and brought asbestos-laden work clothing home), she hadn't been diagnosed with cancer until very recently. This was her third visit and she had a lot of questions. I'm glad that we had the chance to chat and I hope that we meet again.

News from the big green chair...

This week was an Erbitux-alone week, and with a late afternoon appointment, a long day in the big green chair (shown in the picture). There are at least 30 rooms in the treatment center at the Swedish Cancer Institute - some are private rooms, others are more open and separated by curtains. I haven't been to all of them yet, but my favorite rooms are the ones that have the wide open view of the Seattle skyline. All of them have the same green naugahyde reclining chair - not a bad piece of furniture, but one that I will be glad not to see in the future. Also pictured is my IV pump and "tree" with a selection of the drug of the day hanging in the bags. On an Erbitux-alone day, I'll only have two bags on the tree. On the alternating weeks, I get the full-meal-deal and receive a combination of 5 drugs and several additional drugs to mediate the side effects of the cancer-fighting drugs and may have as many as 5 bags hanging on the tree at one time with a tangle of tubing that ultimateky ends up in my "port". I usually bring my laptop computer in with me to try to keep up with emails and some ideas to write up in this blog. I constructively fill up the 4-5 hours I spend in the big green chair, but I do fall asleep sometimes too. The full-meal deal days usually occupy an entire day from 9:00 until 5:00, with travel to and from Seattle, lab tests, visits with the oncologist, treatment, and the waiting time between each process. The Erbitux-alone days are a little bit shorter because there is only one drug to administer, but they still have to observe me for an hour after I receive it to make sure that I don't have an anaphylactic reaction.

I wrote in an earlier post that the Erbitux had given me a rash. The rash let up for a few days, but came back with a vengeance on Monday and by Friday (fueled by another dose of Erbitux on Thursday), I was a walking set of angry red welts that impressed my oncology nurse. Before, the welts were just ugly - now they itch like a million chiggers and hurt like I'm being stung by an entire hive of bees. I am surviving on the entire line of Benadryl products on the market (tablets, ointments, gels, sprays), over-the-counter analgesics, and a host of moisturizing lotions. I think that the welts are starting to let up a little and I may be able to coast into the next treatment on Thursday before starting over again. If I keep getting the response that I got from the first two treatments, maybe this will be a short term inconvenience. I keep reminding myself that if I look this bad on the outside, it must be hell on the tumors on the inside.

This has been a week of good news for some of my friends. One had a confirmation that a tumor found a few weeks ago was not cancerous - a great relief to friends and family. Three other friends who through a combination of surgeries or chemotherapy, are looking at the possibility of either being cancer-free, or with no remaining live tumors. This is great news that I hope will keep repeating itself.

March is National Colorectal Cancer Awareness month. For more information, including a picture of the Super Colon - a 20 foot long by 8 foot high inflatable colon that you can walk through (this an odd educational exhibit that only Zippy the Pinhead can fully appreciate, in my humble opinion), follow the link to: http://www.preventcancer.org/colorectal/.