Got my CT scan results back today. No new cancer growth in my lymph nodes. Yeah!!!! They did find some dots in my lungs - could be the start of a viral growth in my lungs that could have taken hold as my immune system has been regrowing. My lungs feel pretty good so I don't have any obvious symptoms and I am taking acyclovir, which is an anti-viral. Still, the radiologists feel like another chest-only CT scan in another month is prudent just to make sure I'm not growing some crazy viral structure in my lungs. And they still see some sign of scarring from the Bleomycin. And this is the problem with lots of diagnostics. You can get lots of "false" positive that make you go digging around and the digging around activities are not without risk.
But the big, happy news is that my lymphatic system looks to still be OK. That's the news I was hoping to get (and fearing that I wouldn't). Man, it feels pretty good to be alive today after getting that news. So I'm focusing on that and we'll work through whatever lung issues come up. So I will be focusing on being healthy for the next month, keep taking the acylovir and see what the next CT scan of my lungs show.
That's it for now - just wanted to share the good news. Most excellent!!!
Thursday, August 18, 2011
BStrong - another good ride in the books
Saturday Susan and I did the BStrong charity ride which was great fun. Susan did the 25 mile loop with Ross and I did the 70 mile loop with a couple of folks from the DCTBL cycling team I'm on. It was really a great day, marred by one really unsettling moment. Going up a 16 mile canyon (Lefhand Canyon for you local folks), we came across a cyclist that had suffered a heart attack. The ride support was great - there was a sag wagon there when we came by the guy and they were doing CPR on him. They had an AED unit in the car and managed to get him stabilized with some combination of CPR and the AED. They then ambulanced him down to a broader section of the canyon and medi-vaced him out to a Denver hospital. As of two nights ago the paper reported that he was in serious but stable condition. So my hat is off to Paul Balagher and the other organizers and volunteer of the ride. Without prompt medical attention I think it's highly likely that the cyclist would have died there on the side of the road. I hope to never see that again - active CPR on someone is surely a sign that some serious shit has hit the fan. So after that, the whole way up to Ward and Peak to Peak highway, there's a little voice in your head going "Hmm, so just how hard should I push?" That guy looked to be in his 50s. I'm in my 50s. That guy might have had some medical issues that triggered a heart attack. I have some medical issues. So when my feet and hands start tingling and my vision starts to tunnel and my chest starts to get tight, is it just the happy dance of hypoxia brought on by my low hematocrit count? Or is it the grim reaper moseying by for a little visit? I have to admit that I did back off a bit on the 12% grade up into Ward. And I was darned happy to get to the top and out onto Peak to Peak highway in one piece. Yeah, life! Yeah, not having a heart attack! At the top of the canyon they had a nice aid station and I happened to run into one of my oncologists that was also doing the ride. It was really touching to be able to share that moment with him. To be healthy enough to climb 4,000 vertical feet on my bike and receive all the congratulations of the volunteers at the aid station and have them celebrate my efforts to get fit again after 18 months of hard illness. A special moment - made even more special by the fact that my friendly doctor had a big snot hanging out of his nose. Hey, at least his immune system is working, right? Pretty funny stuff - or at least, funny to me. After that I got to enjoy a screaming descent down the Peak to Peak highway into Lyons - 4500 feet of descending in 25 miles or so. I got into a good pace line of about 5 other riders and we swooped down the canyon at speeds of 25-40 mph. Each of us taking our turn to pull, sitting 10" off of someone's rear wheel you've never met before, trusting each other to ride safely and share the joy of being outside, carving through awesome canyons, a roaring mountain stream next to you and being healthy enough to actually share the work load a bit. A pretty special 20 minutes that will stay in my memory for a long time.
Another 30 miles on the flats north of Boulder and we were back at the start/finish line. From there, we hung out at our team tent giving information out to people about Livestrong and our team. And oh, yeah - rehydrating with some tasty beverages, courtesy of Avery Brewery.
After more than a few beverages, I let everyone know that my stomach hair seems to have grown back at a faster rate than my chest hair. Ryan and Ross were not to be out done - they each also claimed to have some manly man hair adorning their umbilicus. So of course, in keeping with the blog tradition of slightly inappropriate body photos, here 'ya go:
And finally, a big thank you to all of you who donated to the ride. Susan and I raised over $1,000 to support Livestrong and Boulder Community Hospital's efforts to make cancer patients and their families have an easier go of things. The total numbers aren't in yet but the afternoon of the ride there was some estimates floating around that the ride in total raised over $200,000. That's a pretty good day's work! My plan is to participate in this ride for the next 20 years or so and I hope to see you there next year. Be warned, though. I plan to kick it pretty hard on the ride up and over Peak to Peak so start your training now or you won't be there in time to join the pace line coming down from Ward to Lyons!!!
Another 30 miles on the flats north of Boulder and we were back at the start/finish line. From there, we hung out at our team tent giving information out to people about Livestrong and our team. And oh, yeah - rehydrating with some tasty beverages, courtesy of Avery Brewery.
After more than a few beverages, I let everyone know that my stomach hair seems to have grown back at a faster rate than my chest hair. Ryan and Ross were not to be out done - they each also claimed to have some manly man hair adorning their umbilicus. So of course, in keeping with the blog tradition of slightly inappropriate body photos, here 'ya go:
And finally, a big thank you to all of you who donated to the ride. Susan and I raised over $1,000 to support Livestrong and Boulder Community Hospital's efforts to make cancer patients and their families have an easier go of things. The total numbers aren't in yet but the afternoon of the ride there was some estimates floating around that the ride in total raised over $200,000. That's a pretty good day's work! My plan is to participate in this ride for the next 20 years or so and I hope to see you there next year. Be warned, though. I plan to kick it pretty hard on the ride up and over Peak to Peak so start your training now or you won't be there in time to join the pace line coming down from Ward to Lyons!!!
Monday, August 8, 2011
Copper Triangle fun
Last weekend Susan and I achieved one of our big goals - riding in the Copper Triangle bike ride. The ride is 80 miles long (in one day!) and climbs 6,000 vertical feet over 4 ascents in Summit and Eagle counties in Colorado. This was a race that I had wanted to do last summer but had to pass on when I got sick with my lung problems from the Bleomycin. This spring when I went through the intense BEAM chemo protocol and got my stem cell transplant, we decided to aim for this as a big milestone celebrating my return to health and our collective return to a life of activity with less focus on medical issues. I'd done the ride in 2009 and really liked it. For Susan, this would be the longest and hardest ride she had ever under taken. We both worked hard in June and July getting ready for the race, culminating in a 73 mile, 5400 ft of vertical training ride in Boulder County last weekend. After that ride I was pretty confident that we would be OK but we were both pretty anxious about whether we would get through the ride successfully.
Here in Colorado in the summer there's always a risk of afternoon rain so most rides start pretty early. The CT is no exception. We were on our bikes and starting the course at 6:01 am Saturday morning. We had a brief thunderstorm the night before but the sun came up at about 5:45 with no clouds in sight. The starting temperature in Copper Mountain at 9300 ft was in the low 50s which was quite warm compared to previous years. Right out of the start the course climbs for about 12 miles to the top of Fremont Pass at 11,200 ft. We had done this part of the course in a training ride so we were both comfortable with the climb. From Fremont Pass you're treated to a 6-8 mile fun descent that goes down about 2,000 vertical feet. Imagine yourself on your bike at 7:15 on a Saturday morning, the sun out, a brilliant blue sky, snow capped mountains surrounding the valley, wild flowers by the side of the road, the quiet hum of hundreds of cyclists zipping down the road. Next, compare this to spending 32 days in a row sitting in a room at the infusion clinic getting toxic chemicals squirted into your chest, transfusions, nausea, etc. Quite a contrast! Although my fingers were kind of hurting from the cold temperatures and some 35 mph descending, I was pretty euphoric about being out on the ride with Susan. The course is very, very scenic - here's a photo of some of the mountains around Fremont Pass:
The ride over to Minturn through Tennessee Pass and over Battle Mountain was really fun as well. We did see one bike accident coming down from Battle Mountain. A girl hit a rough patch of pavement and went down. We saw her sitting by the side of the trail getting care and she looked OK. But we did ride over a pool of her bright red blood on the road which was pretty sobering. Last month a cyclist died coming down this same mountain pass in another bike tour so it's a place where you have to pay attention to what you're doing on the bike. So down from that pass in one piece and all the way down to about 7700 ft in Minturn. Then, the big grind - 20 miles of road, 2400 feet of vertical up to the top of Vail Pass at about mile 72 of the ride. We were both feeling pretty perky up to the East Vail aid station. From there, it's about 8 miles to the top of Vail Pass and I think that no matter how fit you are, at this point in the ride you're suffering a bit. Early in the ride there's a lot of chatting on the bike as you and 4,000 of your closest friends grind up the mountains and fly down the other side. But on Vail Pass, the cyclists are pretty quiet. There's a bit of suffering going on which I really like. Nothing like shared pain to remind you that you're alive and doing something hard! At this point I thought of a couple of people I had known during my chemo treatments that have passed away. It was another powerful moment to call out their names (Roy and Mary!) and think about how thankful I am that I could be out there sharing it with Susan. We both cried a bit as we got to the top of Vail Pass. A celebration of life, of companionship, of love, of hard work and creating a realty (Fra Jaad would call it a narrative) where we can do this together. Super powerful and yes, we did pass some people going up Vail Pass and that made me feel pretty good!
Over the top and a 6 mile coast down into Copper Triangle. A few hours later and here's a look at us enjoying the post ride dinner with our friend Suzi:
So in summary, a very, very happy day. After 4 months of training we achieved our goal. We weren't the fastest around the course - but we weren't the slowest, either. It was a special day. The goal now is to do this ride every August for another 20 years or so! Consider yourself invited to the 2012 CT; I would love to have you along for the ride next year!
Here in Colorado in the summer there's always a risk of afternoon rain so most rides start pretty early. The CT is no exception. We were on our bikes and starting the course at 6:01 am Saturday morning. We had a brief thunderstorm the night before but the sun came up at about 5:45 with no clouds in sight. The starting temperature in Copper Mountain at 9300 ft was in the low 50s which was quite warm compared to previous years. Right out of the start the course climbs for about 12 miles to the top of Fremont Pass at 11,200 ft. We had done this part of the course in a training ride so we were both comfortable with the climb. From Fremont Pass you're treated to a 6-8 mile fun descent that goes down about 2,000 vertical feet. Imagine yourself on your bike at 7:15 on a Saturday morning, the sun out, a brilliant blue sky, snow capped mountains surrounding the valley, wild flowers by the side of the road, the quiet hum of hundreds of cyclists zipping down the road. Next, compare this to spending 32 days in a row sitting in a room at the infusion clinic getting toxic chemicals squirted into your chest, transfusions, nausea, etc. Quite a contrast! Although my fingers were kind of hurting from the cold temperatures and some 35 mph descending, I was pretty euphoric about being out on the ride with Susan. The course is very, very scenic - here's a photo of some of the mountains around Fremont Pass:
Over the top and a 6 mile coast down into Copper Triangle. A few hours later and here's a look at us enjoying the post ride dinner with our friend Suzi:
So in summary, a very, very happy day. After 4 months of training we achieved our goal. We weren't the fastest around the course - but we weren't the slowest, either. It was a special day. The goal now is to do this ride every August for another 20 years or so! Consider yourself invited to the 2012 CT; I would love to have you along for the ride next year!
Tuesday, July 26, 2011
BStrong bike ride on August 13th
One other thing I wanted to mention is that I'm doing a fund raising bike ride on August 13. 75 miles and 4500 vertical feet of biking around Boulder to benefit Livestrong. . Information on the ride is available on the ride web site at http://www.bstrongride.com/. I am also soliciting donations which can be made online at my page for the ride at http://bstrongride.livestrong.org/georgef.
There are various ride lengths ranging in distance from 1 miles (for the kiddies) 25 mile ride (mostly flat) and a 75 mile (goes up to Ward and Peak-to-Peak). This is the ride I’m planning on doing. If you read the story about Kevin on the main page, you’ll see that his two oncologists had to push him up to Ward on his bike. In contrast, my care team is so great that I can get up to Ward on my own now!!! All joking aside, the story of Kevin is pretty powerful and worth sharing. He was one sick dude and it’s really great to see him fight back from his troubles. I’m excited about participating in the ride and doing my little bit to raise awareness and some money to help improve the quality of care that cancer patients can receive here in Boulder County.
So if you live around Boulder County and like to ride bikes I'd love to ride with you on the 13th. If you're not local or don't want to ride, feel free to send some money through my ride page - it's going to a good cause, developing improved cancer care facilities here in Boulder.
cya on the bike!
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checking in - another SGN dose and general updates
Wow. It's been a long time (close to two months!) since I've blogged. A lot has been happening and I don't think I'll try to replay all of it. Just the highlights or whatever comes out of my fingers now that I've actually sat down and started a blog post.
First and foremost, my health continues to improve. The SGN-35 I'm getting does have some side effects so I'm not recovering as quickly as I probably would were I not in the study. It knocks down my blood counts a bit - my crit was 40 in December and was 33 last week, 38 today when I got another dose and will probably oscillate between 32-40 for the next few months until I complete the study in October. Since low normal is 40, a crit of 32 is definitely low enough to negatively effect athletic performance. It's frustrating to only have 3 of the 5 athletic gears I used to have but despite that I'm managing to do most of the things I like physically and enjoy doing them. My hair is growing back, I'm getting more muscle mass in my legs, my gunky lungs are clearing out so all good signs. It's been 15 months on the journey and I'd really like to get past this illness but I'm trying to stay disciplined and just take each day as it comes and not get too impatient, but it's hard.
Emotional state. Pretty good, I would say. I had a chance to participate in a men's support group put together by the medical group I used for my stem cell transplant. There were 7 other guys in the group, all of whom had had at least one stem cell transplant. It was a good experience - sharing laughs, anger, fears, etc. with another group of guys that have gone through similar experiences. Highly recommended if you find yourself in a situation where you're facing a serious illness. By nature we're pretty social creatures and I found it helped to talk through things and get some camaraderie. Not many people in the world can appreciate what it's like to get such a strong dose of chemo and a stem cell transplant so participating in the group was definitely a healing experience. The only sobering part of that experience was recognizing that the odds are pretty good that at least one if not two of the eight of us probably won't be around in 5 years. Ugh.
Another group I've joined is a local bike group in Denver that's got ties to Livestrong. It's a great group of about 30 people that like to bike and are also interested in raising awareness of cancer and promoting the message of Livestrong. Check out the Denver Cycling Team Benefiting Livestrong Facebook page for more info on the group.
All the family is good - various kiddies are transitioning from academics to jobs, moving into new jobs, etc. We'll get some time with both Ross and Greg in the next month which will be great - we haven't seen much of those guys in the last year and with our head so focused on my illness it's going to be really refreshing to get some quality time with Susan's two boys. Looking forward to that big time.
Work is... Work. We've had some ups and downs in the last year which I've managed to keep in perspective given my health concerns. Over the last few months we've made some changes and I think things are going in a good direction. I enjoy being back in the mixer and seeing all my work colleagues every day. Of course, in the perfect world I'd have enough money that I wouldn't have to actually think about making money as a priority when choosing what kind of work I do. But that's still a ways off for me. I did my first business trip in 18 months or so last week and got through that without any health concerns so that was another good milestone that my health is getting back to normal.
Since my last post was about Athena, I guess I would be remiss if I didn't give you an update. She's growing like a weed and has received another nickname - "3 pounds of Knives", or "Knives" for short. This is a subtle reference to the character Knives Chau from "Scott Pilgrim vs. The World". If you haven't seen that movie you have questionable tastes in cinema, but that's a topic for another post. So, the "Knives" reference is because our dear cat now weighs about 3 1/2 lbs and at times seems to be made completely of knives. Like when she jumps on you in bed at 5:30 in the morning with claws and teeth out to let you know she's ready for a little play time. Cute. Anyway, here she is, inviting herself to the dinner table:
The last fun thing to share is that Susan and I are working hard in preparation for the Copper Triangle bike tour in two weeks. About 80 miles and 6800 feet of climbing. It will definitely be a big accomplishment! We've been doing some practice rides in the mountains and Susan recently upgraded her bike and got a bike fitting that has made her A LOT more comfortable on the bike. I think it will be a long day but if everything goes as planned we'll complete the ride and it will be great fun - although maybe not completely fun doing the last big climb up Vail pass...
Well, that's enough for one post. I hope that all of you are doing well and I want to remind you that you promised me that you would get the appropriate physical exams to take care of yourself. I know that having things stuck into you isn't all that much fun (believe me, I know this) but if I can have 38 doses of chemo, a broken back, a blood clot in my arm, interstitial pneumonitis, a port, two PICC lines and a triple lumen catheter injected into my old hide, the least you can do is to get your (breast, ass, genitalia) inspected to keep yourself healthy. Early detection is the key to beating many of these nasty diseases so don't let me down on this, ok?
First and foremost, my health continues to improve. The SGN-35 I'm getting does have some side effects so I'm not recovering as quickly as I probably would were I not in the study. It knocks down my blood counts a bit - my crit was 40 in December and was 33 last week, 38 today when I got another dose and will probably oscillate between 32-40 for the next few months until I complete the study in October. Since low normal is 40, a crit of 32 is definitely low enough to negatively effect athletic performance. It's frustrating to only have 3 of the 5 athletic gears I used to have but despite that I'm managing to do most of the things I like physically and enjoy doing them. My hair is growing back, I'm getting more muscle mass in my legs, my gunky lungs are clearing out so all good signs. It's been 15 months on the journey and I'd really like to get past this illness but I'm trying to stay disciplined and just take each day as it comes and not get too impatient, but it's hard.
Emotional state. Pretty good, I would say. I had a chance to participate in a men's support group put together by the medical group I used for my stem cell transplant. There were 7 other guys in the group, all of whom had had at least one stem cell transplant. It was a good experience - sharing laughs, anger, fears, etc. with another group of guys that have gone through similar experiences. Highly recommended if you find yourself in a situation where you're facing a serious illness. By nature we're pretty social creatures and I found it helped to talk through things and get some camaraderie. Not many people in the world can appreciate what it's like to get such a strong dose of chemo and a stem cell transplant so participating in the group was definitely a healing experience. The only sobering part of that experience was recognizing that the odds are pretty good that at least one if not two of the eight of us probably won't be around in 5 years. Ugh.
Another group I've joined is a local bike group in Denver that's got ties to Livestrong. It's a great group of about 30 people that like to bike and are also interested in raising awareness of cancer and promoting the message of Livestrong. Check out the Denver Cycling Team Benefiting Livestrong Facebook page for more info on the group.
All the family is good - various kiddies are transitioning from academics to jobs, moving into new jobs, etc. We'll get some time with both Ross and Greg in the next month which will be great - we haven't seen much of those guys in the last year and with our head so focused on my illness it's going to be really refreshing to get some quality time with Susan's two boys. Looking forward to that big time.
Work is... Work. We've had some ups and downs in the last year which I've managed to keep in perspective given my health concerns. Over the last few months we've made some changes and I think things are going in a good direction. I enjoy being back in the mixer and seeing all my work colleagues every day. Of course, in the perfect world I'd have enough money that I wouldn't have to actually think about making money as a priority when choosing what kind of work I do. But that's still a ways off for me. I did my first business trip in 18 months or so last week and got through that without any health concerns so that was another good milestone that my health is getting back to normal.
Since my last post was about Athena, I guess I would be remiss if I didn't give you an update. She's growing like a weed and has received another nickname - "3 pounds of Knives", or "Knives" for short. This is a subtle reference to the character Knives Chau from "Scott Pilgrim vs. The World". If you haven't seen that movie you have questionable tastes in cinema, but that's a topic for another post. So, the "Knives" reference is because our dear cat now weighs about 3 1/2 lbs and at times seems to be made completely of knives. Like when she jumps on you in bed at 5:30 in the morning with claws and teeth out to let you know she's ready for a little play time. Cute. Anyway, here she is, inviting herself to the dinner table:
The last fun thing to share is that Susan and I are working hard in preparation for the Copper Triangle bike tour in two weeks. About 80 miles and 6800 feet of climbing. It will definitely be a big accomplishment! We've been doing some practice rides in the mountains and Susan recently upgraded her bike and got a bike fitting that has made her A LOT more comfortable on the bike. I think it will be a long day but if everything goes as planned we'll complete the ride and it will be great fun - although maybe not completely fun doing the last big climb up Vail pass...
Well, that's enough for one post. I hope that all of you are doing well and I want to remind you that you promised me that you would get the appropriate physical exams to take care of yourself. I know that having things stuck into you isn't all that much fun (believe me, I know this) but if I can have 38 doses of chemo, a broken back, a blood clot in my arm, interstitial pneumonitis, a port, two PICC lines and a triple lumen catheter injected into my old hide, the least you can do is to get your (breast, ass, genitalia) inspected to keep yourself healthy. Early detection is the key to beating many of these nasty diseases so don't let me down on this, ok?
Tuesday, May 31, 2011
The newest member of our family
Yesterday we picked up Athena, our new kitten. Another sign of coming back to life! She's 10 weeks old and is a grey, black and white tabby, in the Socrates tradition of cats. She was born on the Longmont Dairy Farm and her mom was killed crushing the road to relocate her litter. Athena was the only survivor and the family threw her in with a foster cat mom who welcomed her with open (arms? nipples? whatever...)
Here's a video of our newest family member. We're really happy to have some new cat energy in the house. We will all grow up and be healthy together! Good times, for sure!!!
Here's a video of our newest family member. We're really happy to have some new cat energy in the house. We will all grow up and be healthy together! Good times, for sure!!!
checking in - SGN dose 2. Life is good!
Howdy, team. Just a quick note from the infusion center lthis morning to let you know that things are going well. I'm getting another dose in the clinical trail I'm in. My blood counts continue to improve. Still on the lower end of things for whites, reds and platelets but everything is headed in the right direction. My neck shows no signs of any new lumps and bumps and the CT scan they did 3 weeks ago was normal. It did show some residual tissue damage from the Bleo toxicity I had last summer but hopefully that will go away over time. My pulmonary function is ok so I'm not too worried about this. I still do have some minor issues with my left arm due to the blood clot that started last summer so we're going to do some additional diagnostic work in August when I get my next CT scan.
While I was typing this one of my transplant buddies took a dinger in the hallway - the wonder of having low red blood cell count. Stand up to go to the bathroom, get dizzy - crash! Full contact potty run, as it were. Because of his low platelets they're a bit concerned that he may have some internal bleeding from the fall so they're sending him across the street to the hospital. His day just got a lot more complicated! So I'm happy to have a hematocrit of 40.5 and be able to stand up without feeling like I may pass out. It's the little things in life. No bumps on your neck, a functional (if slightly beaten up) pulmonary system and a healing blood system.
That's it for now. No news is good news in the cancer world. Later!
While I was typing this one of my transplant buddies took a dinger in the hallway - the wonder of having low red blood cell count. Stand up to go to the bathroom, get dizzy - crash! Full contact potty run, as it were. Because of his low platelets they're a bit concerned that he may have some internal bleeding from the fall so they're sending him across the street to the hospital. His day just got a lot more complicated! So I'm happy to have a hematocrit of 40.5 and be able to stand up without feeling like I may pass out. It's the little things in life. No bumps on your neck, a functional (if slightly beaten up) pulmonary system and a healing blood system.
That's it for now. No news is good news in the cancer world. Later!
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