Happy Thanksgiving! And hi-tech kitty making phone calls

Susan's off singing at church so this morning it's just me and the cat kicking around the house. As is fairly typical of most families, we spent a bit of time this morning on the phone catching up with remote relatives. Caitlyn gave Athena a call and got caught up on the goings on of Mrs. Grimsby-Whiskers, aka Knives Chow, aka Athena Popidopalus Florentine. When you don't have an oppose-able thumb it's a bit tough to hold a phone but the Bluetooth headset works pretty well as long as you stay still in your kitty bed:

I for one am pretty happy to be not dying of lymphoma. That's pretty cool! I've dropped that line on people a couple of times this week and it's a bit of a conversation stopper so I guess I should mellow it out a bit. Maybe something like: "Yeah, I've got a lot to be thankful for this season." So here's my list of things I'm thankful for, in perhaps something like priority order:

• Not dying. Yup, that's #1, for sure
• Loving family (including the high-tech kitty pictured above)
• Great friends, both socially and at work
• Riding my bikes
• Hair

Well, that's probably enough for now. I've got a date with some leaf raking, then a bike ride, then off to some friends' house for thanksgiving celebrations. I hope that today you take a moment to appreciate the good things in your life. I've had my share of shitstorms in the last couple of years but today things are looking pretty good so I'm going to focus on that and enjoy the day.

BTW, Athena is a bit shy about giving out her cell phone # so I'm afraid I can't share that with you. If you need to chat with her, drop Susan and I a note and we'll see if we can get her to call you back. No promises, though :)

Dodging the Sword of Damocles - another clean CAT scan

Well, it's been 3 months since my last post. So - hello! Life is going pretty well and we had another big milestone this past week so I wanted to update all of you with the good news.

First and most importantly, I had another clean CAT scan. This means that there are no obvious malignancies growing in my lymphatic system. It's hard to describe in words how thankful I am for this result and how anxious I've been about the results. The left side of my neck has never felt the same since I had the excisional biopsy in February of 2010 and with all the lymph node malignancies and scarring in my lymph system, the lymph chain in the left side of my neck is anything but normal. From all this trauma, I occasionally get little twinges when I turn my neck, do anything with weights over my head, etc. So of course, anytime this happens I immediately worry that it's a sign that my lymph nodes are getting inflamed with new cancerous cell growth. I've been going into the doctor every 3 weeks for a dose of SGN-35 and every time they check my neck and assure me that things feel normal. So there really was no reason to think that bad things were happening in my neck, but I spent most of the last month or two worrying that I was going to be back where I was last December - feeling ok but actually getting sick again with more cancer.

So you want to talk about an anxious moment - the phone rings and the caller id says it's the hospital. And you know, without doubt, that the next 30 seconds are either going to bring really good or really bad news. Good news, life goes on normally. You can go to work, ride your bike, be with your family. And the odds go up that you might be around for a while. Bad news and another bomb detonates in your life. More chemo, another stem cell transplant, stop work, financial insecurity for your family, feel like shit for months, and the odds of death in the not too distant future ramp up. All that as a result of answering one phone call. So, a big breath and you answer the phone. The temptation is to not answer but that obviously doesn't change anything. And the news is good - a normal scan... And everything in your life is given back to you - your family, your joys, your plans for the future. In this post right after my diagnosis I mused that we're all one phone call away from Really Bad Things. But for me, last Thursday, I was one phone call away from some awesome news. For now, some combination of the chemotherapy I'm taking and my immune system are keeping everything normal. So a huge sigh of relief and life can now go on with some semblance of normalcy. The scariest 10 seconds of the last 3 months resolved into the happiest phone call in the last 3 months. Just like that, everything opens up. Such an intense range of emotions it's difficult to describe. If you've had cancer or been a support person for someone with cancer this all is probably really familiar to you. If you haven't had cancer in your life, be thankful that you don't have this experience - it's not something I would wish on anyone. I've read that some people get to the point where they feel thankful for their cancer or wouldn't change having it because the experience has become part of who they are. Maybe they're more emotionally advanced than I am or maybe it's just a coping mechanism or maybe I'll understand that some day. But for now, I still feel like I Don't Want This Fucking Thing In My Life. But it is and I'll have to deal with these phone calls for the new few years. So one down, more to go!

That's the summary of the intense stuff. A brief update on other things that have been going on for the last couple of months:

• My health in general has been pretty good. In late August I had some bacterial or viral visitors that took up residence in my lungs and were giving me some fevers. A combination of rest, anti-virals and antibiotics seems to have cleared that up. A good event coming out of that incident was that I had another pulmonary function test in early September and it showed that my lung function is very good - better in fact than last January before I had the stem cell transplant.
• The chemotherapy continues to lower my hematocrit which in turn impacts my ability to work out hard. I'm riding and really enjoying being on both my road and mountain bike rides but the social structure of my rides have changed. There are a set of rides and people I can't ride with anymore because I'm not fit enough. Everyone suspects that after I complete this round of chemotherapy my hematocrit will improve but no one's declaring that it will come back to where it was pre-illness. That's pretty sobering but it's probably a 2nd, 3rd or 4th order effect, where the big 1st order effect is that I'm not dying from lymphoma.
• Susan and I are starting to get more excited about doing more cancer survivor related community service. We're in the midst of planning the year for our Livestrong cycling team and we're both looking forward to getting more involved with helping cancer survivors cope with the issues they face as they navigate through the illness and their recovery from it. As you can tell from the amount I talk about riding my bike, it's been a great source of joy for me during this journey and I really think it's helped me manage the illness better from a medical perspective. I'm hopeful that we can share this message with other cancer patients and help them use exercise as a way of improving their quality of life and their disease outcome.
• My hair has grown back. A little less white hair and a bit finer than it used to be but basically my hair. The best part of having hair is that it's evidence that I'm not on any crazy chemotherapy so I love seeing my hair every morning in the mirror!
• I've completed 8 cycles of SGN-35 (usually a dose every 3 weeks) and I've decided to do another 8 doses. That will mean I'll be getting chemotherapy until next May. Which sucks. But I think it gives me the best chance of being disease free for the long term so I'm ready to do the work. It's not a horrible drug in terms of side effects but I do feel it. Some lethargy, various levels of weirdness the first few hours after I get the dose but no big side effects. Since it's a clinical trial they don't have any long term data yet on how this affects survival rates but everyone on my care team is of the belief that as long as I don't get any bad side effects that More is Better. It probably also means that I stand a good change of being protected from any cancer growth in the next 24 weeks so I get 6 months of chemo air cover before I need to face the world without the protection of chemotherapy keeping my immune system intact.

That's it for now. I hope all of you have a nice holiday season. I'll try to blog a bit more frequently than every 3 months so check back now and again and look for new updates.

trfn!

Hell, yeah. Another clean CT scan

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!!!

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!!!

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!

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!

g

 

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?