Janet Freeman-Daily's Journal
Still BFF with NED
Written Dec 6, 2013 4:20pmNovember 5, 2013 marked my one year anniversary on the ROS1 clinical trial at the University of Colorado in Denver. After my August appointment, my clinic appointments in Denver are now stretched out to every 8 weeks instead of every 4 weeks, with labs drawn at my home clinic in between Denver visits. Nice to have more time at home!
Still have side effects, but most are lessening. The only ones that are really pesky now are the continuing edema (better than it was) and neuropathy in my feets and lower legs. My breathing is actually getting a bit better. I can get by without additional oxygen in Denver now, which is good because the noise from the oxygen concentrator keeps Gerry awake at night.
Since August I've had two additional PET-CT scans, one every 8 weeks at University of Colorado in Denver. Both the October scan and the Dec 2 scan still show No Evidence of Disease. I had pretty severe scanxiety before this last scan (read more at http://grayconnections.wordpress.com/2013/11/30/my-scanxiety-wont-listen-to-reason/) but it was baseless. I know my cancer will progress eventually, but not this year!
I'm becoming more of a lung cancer advocate. I've joined a local lung cancer support group, I'm blogging more at my Gray Connections wordpress site, and in October I was invited to work with a team of lung cancer advocates and docs to host the Lung Cancer Social Media (#LCSM) chats on Twitter (I occasionally moderate). My church invited me to speak on "Gratitude" (you can read the speech on my blog), and my sister Karen and I teamed up to talk to a group of hospital chaplains about family dynamics and lung cancer. Right now I'm working on an Op-Ed opinion piece which I hope will be accepted by a major newspaper.
This continual focus on lung cancer projects does make it hard to ignore my status as an LC patient, but it gives me purpose and a sense of giving back.
Happy Holidays to all!
Still Dancing -- OK, Walking -- with NED
Written Aug 18, 2013 8:08pmMy August 12 PET-CT scan still shows No Evidence of Disease (NED). Woohoo! Having completed 10 cycles on Xalkori without progression, I now will go to Denver at 8-week instead of 4-week intervals, and have labs drawn at my home clinic between Denver visits.
I have muddled my way through hamstring rehab and am back to VERY basic strength training with light aerobic exercise on the recumbent bike and treadmill. The best description I can find for my state of fitness is "wimpy." If I walk one city block here at sea level at an moderate pace (about 2.5 mph), my breathing speeds up a good bit and my heart rate goes to 140! I have to use an oxygen compressor to do the same in Denver without gasping and stopping after 500 feet. The persistent Xalkori-induced edema isn't helping.
The physical therapist tells me it will take a looooong time to rebuild the muscles that have atrophied due to disuse and cancer treatment. I made sure she gave me clear guidelines about pacing my recovery, because, as you all know, I'm SO good at taking things slow.
I've developed something called "trigger finger" in my hands, and the oncologist says he doesn't think it's related to taking Xalkori (although edema might play a role). Because of this and some other issues, I've scheduled an appointment with my primary care doctor to discuss whether my thyroid is starting to misbehave in response to the radiation dose it received last year. However, other non-cancer conditions could cause my symptoms, too. Rather than diagnose myself (I know, I know -- why stop now?) I'll hear what my PC doc thinks.
So, here I am, just taking life slow, glad I'm around to enjoy the magnificent Pacific Northwest summer. I'll be speaking at the World Science Fiction Convention in San Antonio this year over Labor Day, then mostly hanging around the house attempting to declutter and find the floor of my den once again.
Wouldn't it be wonderful if I could actually HIKE somewhere next year? Or take a cruise in the Mediterranean? Or ...
Because It's Joooooon ... (Well, OK, July)
Written Jul 2, 2013 11:43pmMy June PET-CT scan again showed No Evidence of Disease -- woohoo! I continue to have side effects (persistent radiation pneumonitis, a small pleural effusion, edema and peripheral neuropathy), but being alive is a worthwhile trade. I'm also in rehab for a partially torn hamstring, which thwarts my attempts to exercise. Nice to have an excuse for not running the Seattle Marathon, though.
My writing has been limited to helping son David with his geology term paper last quarter, and occasional posts for my blog at http://grayconnections.wordpress.com. My post last Wednesday, a response to my insurance company's you-don't-need-a-biopsy-because-you're-going-to-die-anyway letter, has been viewed over 3300 times thus far, thank to friends and readers who boosted the signal. I'm glad so many people read my message that a stage IV lung cancer diagnosis is not an automatic death sentence.
Gerry and I expanded my June trip to Denver into a two-week road trip through Yellowstone, Grand Tetons, and Craters of the Moon National Parks, and a couple of fossil-rich national monuments. I'm such a geology geek! But then, you already knew I had rocks in my head, right?
Thank you for your prayers, guestbook messages and written notes of encouragement. I really appreciate them!