2012 Hope Summit

This past Friday morning, I boarded a plane and flew to Washington DC for the LUNGevity Foundations’s Hope Summit, a weekend conference of lung cancer survivors. It was an amazing and inspiring event, probably the largest gathering of lung cancer survivors ever, with close to 60 of us in attendance.

I had met some of them at last year’s Hope Summit. Some of them I knew from the Lung Cancer Support Community online forum, and some of them I was meeting for the first time. LUNGevity had given me a travel grant and free room, and that enabled me to go again.

The Saturday and Sunday event sessions were held in the Capital View Ballroom on the top floor of the Key Bridge Mariott, which is where we stayed. It offers a spectacular view of DC and the Potomac River. There were speakers and panel discussions. Among Saturday’s speakers was Zachary Klint, who gave a speech on pulmonary rehabilitation. This topic was especially interesting for me. I think it’s an under-used tool for lung cancer survivors. I think I’m living proof of what is possible with surgery depleted lungs, if you aren’t afraid to tackle serious aerobic workouts, and that more doctors should prescribe pulmonary rehab for their patients.

Teri Simon was supposed to moderate the first panel, covering the topics of emotional effects of lung cancer, the stigma, scanxiety, and living with lung cancer. But, she was in the hospital and unable to attend, always a risk when a speaker is a lung cancer patient, I guess. Eric Byrne from Scotland, an LCSC forum member I really enjoyed meeting, filled in for her. Mel Majoros of Empower Radio moderated an afternoon panel on advocacy.

Sunday morning’s keynote speaker was author and speaker Doctor Lynne Eldridge. I sat on the last panel, on healthy living and exercise. I’m more of a doer than speaker, but always enjoy sharing my story in this kind of setting. If there’s anyone who needs reminding that an athletic, full life is possible after cancer, it’s lung cancer survivors.

I talked so much over the weekend that I was hoarse by the time I flew back home on Sunday evening. You just can’t imagine how enjoyable and inspiring it is to do that much mixing with other survivors until you do it, and hear their stories. Big thanks to Katie Brown, who hosted the event, and all the LUNGevity people and sponsors.

Happy New Year!

Between the holidays and doctor appointments, I only rode to work three days this week and three days last week. I also did 25 miles from home on Saturday morning.

5 miles into this morning’s ride to work, I reached my mileage goal for the year, 7,500 miles. I’m not riding tomorrow, so these mileage totals will be my totals for the year.

I also passed a milestone on December 20th. On that day, I became a four year lung cancer survivor. As of my last scan, I was still cancer free, so my goal of remaining cancer free for five years and being considered cured, is in sight now. Happy New Year, everyone!

2011 days ridden to work: 219
2011 commuting mileage: 5354.7

2011 overall days ridden: 263
2011 overall mileage: 7519

Don’t Set Limits

The Lungevity Foundation posted my Guest Blog on their website today. Here is the text from it:

It’s mid March, 2011, as I sit down to write this. My 60th birthday is in three weeks. It’s a birthday celebration that didn’t seem too certain when I was diagnosed with lung cancer forty months ago. But I was in a small minority of lung cancer patients who are diagnosed early, and have remained cancer free since my surgery in December, 2007.

The biopsy from my surgery found one cancerous lymph node, so my diagnosis became stage 2. I completed three rounds of chemotherapy in April, 2008. I don’t yet know if I’m cured, but at least I’ve had thee plus years of good health since my diagnosis and surgery. Hopefully, early diagnosis will soon become a lot more common, and a majority of lung cancer patients will enjoy at least a few cancer free years after treatment, just like I have. For those lucky enough to experience that, I say this: don’t set limits on what you can do. Challenge yourself to see what you can achieve, and how good a quality of life you can have after cancer.

I was already a long distance cyclist before my diagnosis. I even did a 200k ride two weeks before my surgery. So, challenging myself to see what I could do was already something I was familiar with. Setting out to see if you can do a 200k (125 miles) or 300k (187 miles) randonneuring ride on a bicycle is pretty scary at first. The natural thought is that it’s just impossible for an ordinary person to ride that far on a bicycle. But, with good training, and building up to longer distances, it turns out that it’s not nearly as tough as you thought.

But like everyone who’s diagnosed with lung cancer and scheduled to have part of a lung removed, I wondered what it would be like afterward. Research had already told me that the body cannot regenerate lost lung tissue, and that chronic fatigue was a common symptom of too much lost lung function. My lung function was good enough that I wasn’t worried about chronic fatigue after surgery, but would I still have the stamina to do a 200k ride? Would I still be able to average over 120 miles a week on a bike, like I did in 2007? My mindset was that I would challenge myself and find out.

Before the end of May in 2008, six weeks after I finished chemotherapy, I did a 100 mile ride, and in early June, I did a 200k. So yes, long distance riding was still possible after lung cancer. In the time since those two rides, I’ve done 51 more rides of 100 miles or more.

In 2010, my riding focus changed from long distance riding to commuting to work on my bike. But even with the majority of my 2010 miles on a heavier commuting bike, and holding down a full time job all year, I still managed over 7,500 miles ridden for the year, an average of over 140 miles a week.

What do I hope to accomplish next on a bike? At my current pace, by the end of this coming June, I will have ridden 24,900 miles since my diagnosis. Does that number sound familiar? It’s the circumference of the earth. If I reach that milestone, I will have ridden around the world since my lung cancer diagnosis.

Can I do it? I think I can. But, things like that are only possible if you challenge yourself, rather than arbitrarily deciding what you CAN’T do.

In other words, don’t set limits!

DFW Walk/Run for LUNGevity

This event was a great success. With the matching donations pledged, the total funds raised was over $45,000 as of this afternoon, which was much more than originally anticipated for the event.

Thanks very much to everyone for their donations and support. As most of you know, this is a cause which has gotten my attention, and it was great to see all the smiling faces at the event. I even managed to get through my speech without any disasters.

CT Scans

This first scan is from November, 2007, and brought about my surgery and diagnosis. The lung cancer tumor is circled in red.
ct scan

This next scan is my most recent scan. I think it looks pretty good, don’t you agree?

trainwreck

Neighborhood ride

Why bother doing a ride report on a neighborhood ride? Yes, it was just a neighborhood ride, but it was my first ride over 50 miles since the FWBA Bicycles Inc metric century on March 1st. Until today, I hadn’t even ridden the Corsa since that March 1st ride. The only other ride of over 50 miles I’ve done this year was my Arlington-Briaroaks route on February 2nd (several rbenters will remember that as the day I ate a sandwich and showed my roadrashed arse at an Arlington Subway). Up until today, the 20th, I only had 100 miles of riding in April, and I only rode 220 miles in March.

Last Saturday, I had finally started to feel better after the chemo. So of course, on Sunday, I came down with a cold. I hadn’t had a cold since last August. Still, I guess it’s better than having one after surgery or during chemo. Between feeling bad with the cold and all the wind this week, I only rode twice, even though I had intentions of riding more. I left my driveway at 2:30 this afternoon. It was 80 degrees and mostly cloudy with (surprise) a howling south wind.

Most of the first few miles of this route are straight south against the wind, down SH360. At the tough little hill at mile 5, coming up to Broad Street, I was down to 5 mph, as slow as I ever am on either the Nimbus or tandem, so I knew early that I wasn’t going to be especially strong. Around mile 14, as I was eastbound on Grand Peninsula Drive, I passed a roadie who was going the other way. I was about to do a short loop through a neighborhood, then be westbound on Grand Peninsula, hooking up with Seeton Road to make my only stop at Britton Park at mile 21. I figured I would be a half to three-quarters of a mile behind this rider, and because the stretch out Seeton is a popular bike route, I figured this guy would be in front of me the whole way. I had my rabbit…

After my first couple of turns, from Grand Peninsula onto Coastal, and from Coastal onto Grand Way, I barely got a glimpse of the rider as he made the next turn. By the time I crossed England Parkway, heading south on Arlington Webb Britton, though, it was obvious I was gaining on him. He made his first glance back at me (that I noticed) as he turned onto Seeton. Most of the rest of Seeton is wide open, and the wind was brutal. About a half mile before Britton Park, I passed him. As I passed him, I said, “Tough wind today, isn’t it?” He answered with a mumble that was unintelligible; I could tell he was blown up from trying to stay in front of me. I had to smile at that. I may be slow these days, but I’m still not the slowest around (yet).

I didn’t get to smile long. Just a couple of miles further, shortly after turning south on Lakeview, headed for SH287, another roadie appeared behind me. The rollers on this stretch can be pretty tough against a 20 mph wind, and I figured my punishment for feeling good about passing a roadie was going to be getting passed by another roadie shortly afterward. But, he never caught me. He did gain a bit on that last tough hill before SH287, as I was gasping for air. He turned around at SH287; I was already a quarter of mile down SH287, about to exit, to turn left on St Paul Road, and head west under the SH287 overpass.

Most of the rest of the ride was with the wind, and that was certainly welcome. My average ride speed had dropped so low fighting the wind, I spent the rest of the ride trying to raise it. I ended up with 50.2 miles. Overall, it was a flat route, with just 1115 feet of climbing. My average speed was a blazing 16.5 mph, and I was very wiped out by the time I sat down at home. Considering the last four months, though (my surgery was four months ago, today), I’ll be happy just to be able to do 50 miles. Hopefully, with better weather and improving health, I can start getting some miles again.

Today’s route

Third round of chemo

Friday, March 29th, I got the 6 hour cisplatin IV that started the third round. I had already decided not to ride for a week following it. The next day, my toes started aching, but since I was already on medication for that, it wasn’t nearly as severe as the last time. I felt pretty good until the next Wednesday, when exhaustion set in, but it wasn’t as severe as it was after the second round, and I went to work every day. The next Friday, April 4th, I got the gemcitabine IV. I also got my three month chest x-ray (it was clear). I was already feeling poorly, and felt bad enough after the treatment that I just went to bed for the rest of the day.

The next day was my 57th birthday. rbent, the local recumbent riders group, was having a ride and picnic nearby in Fort Worth. I had given up on trying to ride with them, but planned on joining them for the picnic. My wife was taking off work early to drive me there. Unknown to me, she was also planning on picking up a cake, and making a birthday party out of the picnic. None of those plans worked out; I felt so bad that I went back to bed late that morning, and went nowhere all day. Happy birthday, Bud.

I felt better the next day, but a bit feeble, so I settled for an easy day around the house. On Monday, I went to work, and planned on riding that evening, but the wind was howling, and I still felt a bit feeble, so I didn’t. Yesterday (Tuesday), my wife and I did 25 miles on the tandem, and I felt fine. My blood counts will bottom out this week, so I plan on just doing short, easy rides. Next week, I plan on slowly starting to ramp things up again, with some 60 mile club rides and such, this month. I probably won’t try a 200k brevet until May or June.

I’ll be visiting with my oncologist a week from Friday, which is when a fourth round would have started. He still wants me to come in for blood work, to see how I’m doing, and to discuss what’s next. I’ll be getting chest x-rays every three months and CT scans every six months.

Chemotherapy was pretty tough for me. I plainly don’t tolerate it as well as many people do. The only part of it I really aced was the gastro part. Most patients on the drugs I got suffer either serious constipation or diarrhea, and many people suffer both, at different times. I had neither. My taste buds are shot; there are so many favorite foods I can’t eat right now. But, my wonderful wife did such a great job coming up with and preparing healthy meals that I was always able to eat, lost no weight, and I think all of the fiber I always eat helped keep things moving through correctly.

Feeling bad

I don’t seem to be having a very good week. My wife and I managed to do 25 miles on the tandem Tuesday, but by yesterday the aching in my toes (neuropathy from the chemo), which had started Sunday, got so bad I had to get a prescription of gabapentin for it. Today, I feel in a funk. I’m not sure if it’s the chemo or the gabapentin. Plus, my toes still ache, big time. And tomorrow is the gemcidabine chemo that happens on day 8 of the cycle, so things aren’t getting better, soon.

Maybe this would all be easier if I had had some actual symptoms from my disease first, but all I’ve had is the horrible surgery and the horrible chemo, and it is wearing on me. Some oncologists only use three rounds of chemo for adjuvant treatment, and it may be pretty difficult for me to sit still for that fourth. Even getting the third is an awful thought, right now.

Second round of chemo

The weather didn’t cooperate very well last week (snowed twice ……… in Texas, yet), so I only got 43 miles during the week. Friday was my long six hour cisplatin plus gemcidabine IV, and I was still pretty trashed the next day. Today, though, I got out and rode 40 miles with two friends (see the ride post following this). I wasn’t very strong on the hills, and was generally slow, but it was 40 miles, anyway.

Conferring with my chemo doctor before the treatment, he was amazed that I had ridden 63 miles last Saturday. Of course, non-riders are amazed at anyone doing 63 miles, so I guess it’s all relative. My blood counts were normal; I hadn’t lost any weight, so the doctor was happy. I’m tired after today’s ride, but really don’t feel bad at all. If it doesn’t rain tomorrow, I’ll probably have my wife on the tandem for 25 miles.

Between chemo riding

This was my no-treatment week, I felt ok, and the weather was mild (except for Tuesday), so it seemed like a good time to get some miles:

Monday = 25.3 miles
Wednesday = 25.2 miles
Thursday = 27.0 miles
Today (Sat) = 62.7 miles

I weigh 3 pounds less than I did on December 19th, the day before my lung surgery, so my weight is holding up alright so far.

The chemo drugs do take their toll, though. After today’s 62 mile FWBA Bicycles Inc club ride, I was as wiped out as I’ve ever been after a 200k. My red blood cell count is bound to be lower after the next round, so I don’t think I’d better do any more rides of this length until the chemo is over, and I have recovered. Round 2 starts next Friday.

FWBA Bicycles Inc route