Saturday, December 31, 2011

Happy New Year!

Well, in a few hours it will be 2012 here in Colorado so I thought I would muse a bit on the year gone by. It's been a hard year with some serious medical hurdles to clear - as you, my faithful blog reader have seen through my blog posts. The big upside to this year is that I am demonstrably healthier than I was last year at this time ("Look, mom - no bumps on my neck"!). I'm involved in a clinical trial for a new antibody therapy drug called Adcetris  which does cause my hematocrit to trend downwards so my athletic performance still isn't back to anywhere near where I was pre-cancer. But by all normal measurements I'm pretty healthy - going to work full time, exercising several times a week, eating and sleeping normally, able to travel for business, etc. I'm looking for 2012 being a year of continued good health, some good work at my current job and getting more involved in LIVESTRONG biking and cancer support activities. For the occasional blog reader and to help me get some sense of closure, here's a summary of what the year felt like to me.

January - uggh. Pretty depressed with the news of the recurrent Hodgkins. Go through a battery of tests to make sure I can tolerate more chemo. Start chemotherapy. Start to learn about stem cell transplants (basically a transfusion of your own blood after getting blasted by high dose chemotherapy).

February - Complete initial chemotherapy. Very positive response to the chemotherapy so this buoys my spirts quite a bit. Get some time off between the chemotherapy and the start of the stem cell therapy process. Try to get as healthy as possible for the upcoming shit storm.

March - The chemo gauntlet is thrown down. Harvest bone marrow stem cells, then blasted with high dose chemotherapy. Bye bye, immune system. And hopefully, bye-bye cancer. Then on March 28th, my "2nd birthday". I get back my own stem cells and start to rebuild my immune system. At the end of this month we get the sad news that Socrates has passed away, probably from some sort of pancreatic illness. Just another "fuck-you" that the universe cares to throw at us. Starting to feel like my middle name is Job. But wait, there's more...

April - The missing month. 32 days in a row of staying in the house, only going out for walks around the neighborhood or to visit the doctor's office or hospital every day. Multiple transfusions of platelets and red blood cells. Lose 12 lbs in 4 days. Chemo makes my entire GI tract - from mouth to anus - feel pretty unhappy. Pick up some small infection but given my non-existent immune system, I have to get treated with 5 infusions a day for 10 days. This starts at 5:30 am and ends at 11:00. At home. All done by Susan. While I try not to puke or pass out from various things. My workouts are reduced to doing laps on the 2nd floor of our house. Susan earns Wonder Woman status for being with me through all of this. There are angels living among us and I am very lucky to have one as my wife. I build up a debt of about 64,000,000 chick flicks I will need to go see to pay her back for everything she has done for me.

May - Coming back to life. Get back to work, immune system reboot complete, a bit more exercise. Platelets, reds and whites are all reasonably happy. I get back on the bike and rejoin the human race. At the end of the month we welcome a new member into the family - Athena joins us as our next generation philosopher cat. Another sign of returning to life...

June - More improvements in health. Manage to ride on a team that does the 24 hours of eRock. Am probably in the 95% percentile in terms of lap speeds for participants in the race. Receive many pity votes going up the one hill ("you're doing great!") as people stream by me. Resist the urge to put bike pump in spokes of passing well wishers. Susan's legend gains a new entry as she super-mans on the course at 5:30 am and comes into the transfer station covered in blood. My Woman of Steel gets patched up and returns to the race course to do another lap. I am SO HAPPY to be able to ride my bike with friends and not get sick or crash or throw up or pass out or... But I long for the days when I was not in the bottom 5% of bike riders in terms of speed around the course.

July - Steady progress on all fronts. Training for the Copper Triangle and the BStrong rides in August. Lots of work upheaval with management structure changes. Check my neck about 30 times a day, waiting for the return of the dreaded bumps indicating the cancer has come back and is trying to kill me. Living under the cancer Sword of Damocles. Join a men's support group and we chat about our mortality, fears, hopes, emotions. Anger, fear, sadness, enlightenment. A pretty intense hour every week for six weeks. A good group of guys and I hope they all are around for a long period of time. During the six week period, one of them gets a diagnosis that his multiple myeloma as returned and another ends up back in the hospital, probably related to his leukemia. Nothing casual about the events in the lives of these guys. As always, it's good know that there other people in the same shit storm as you but it's still hard work to sit down and share the ups and downs of this kind of experience.

August - Great success at both the Copper Triangle and BStrong rides. I finish both of them and get to celebrate each success with friends and family. CAT scan shows no new growths in my lymph nodes. Yeah! However, towards the end of the  month I start to develop some sort of illness - spiking fevers after I exercise. Uh-oh...

September - Despite fears of some sort of infection getting a hold of me, we travel to Bozeman to see Caitlyn. I end up getting a bit sicker while there and we decide to come back a bit early. We had a good time visiting for about 5 days in total but I'm scared that I'm sick again. My lung function doesn't feel great and I'm worried that my immune system is in trouble. Get back to Denver, do some pulmonary tests and my lung function is actually better than in February. I start an anti-bacterial medicine that seems to get a handle on whatever is making me sick and I gradually get over whatever it is. So now you're sick, now you're better, we don't know what it was but don't worry. Am reminded again that despite all the advances in medicine it's still a bit of an imprecise  science.

October - Settling into a pretty nice routine. The SGN-35 protocol makes me a feel a bit fatigued but in general I'm tolerating it ok. I develop a couple of skin rashes that no one can completely explain. Start doing some more heavy duty business traveling with no side effects. Starting to get nervous about my next CAT scan.

November - Another normal CAT scan. Yeah! Enjoying life and trying to be patient with the fact that I'm on a 21 day blood chemistry roller coast. Get the SGN-35 on day 1, feel ok for a couple of days, then  feel a bit fatigued for 4-6 days, then gradually improve until day 21, then start it all over. Get a small head cold and get over it without any medical intervention. Yeah! My immune system is functioning ok...

December - Get another rash. No one knows what it is. Gradually it goes away. SGN-35 roller coaster continues, although on December 19th my 'crit is > 40 - the first time this has happened since December of 2010. Awesome holiday times with family coming in from all over the world. Still working through intermittent periods of anger, fear and sadness but the good moments far out weigh the bad.

And speaking of good moments, I have to wrap this up and head out for a Near Year's Eve celebration. I hope your 2012 is full of good friends, family, love and good health. Cya on the bike/hockey rink/soccer field!

September

Thursday, November 24, 2011

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 :)

Sunday, November 13, 2011

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!

Thursday, August 18, 2011

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!!!


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!

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!

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?

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!!!

video

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!

Sunday, May 15, 2011

A good weekend

Howdy, all. A quick update on how things are going. We had a really nice time this weekend. Friday evening we got together with friends and caught up over beers and wine. Oops! Needed to get up at 5:15 am on Saturday for a ride so maybe we should have backed off on the drinking a wee bit. But hey, we've decided that May is the month to Be Bad. April was the month where we needed to be Really Good because of my immature immune system. No drinking, no socializing, no restaurants, no being around groups of people. So now that I'm getting back to normal, we're getting a bit crazy. In our case, that means getting to bed at - whoa! - 10:30 on a Friday night and having - yeah, be ready to be shocked - a whopping 3 drinks over a 4 hour period. So maybe not super crazy but it's a big step toward crazy town after being trapped in the house for 35 days.

Anyway, we're up at 5:10 am on Saturday and down at Wheat Ridge Cyclery at 6:30 am to help volunteer for a bike ride to raise money for Livestrong. This was my first chance to catch up with my DCTBL cycling teammates in about six weeks and it was really touching. Obviously this is a group that is very tuned into what it means to go through cancer and treatments and everyone was super supportive and nice to me. For those of you that know me well it may come as a surprise that people would be nice to me but it's just because they don't know me that well yet :) The weather wasn't great (40 degrees, overcast, damp) but everyone was a trooper and the ride went off very smoothly. We had about 125 riders that rode from the Wheat Ridge Cyclery store at 38th and Wadsworth up to Red Rocks and back. All the money from the ride went to Livestrong so thanks to WRC for throwing in some nice swag and providing logistical support for the race. I manned the aid station at RR and then rode the back half of the ride. Susan rode up and back so we managed to get to ride back together which was fun. One of the guys from the team shadowed us in his truck, took pictures and offered to be my personal sag wagon if I couldn't handle the ride. Since it was 16 miles that was basically downhill I got there ok but to have a personal sag wagon? Did I mention how AWESOME these people are? Yup, a good group of humans generating a whole bunch of good karma in the community. I'm touched and honored to know these folks. All in all, a great Saturday morning - bikes, friends, some charity work. Check, check, check.

And one other funny anecdote. Ron Kiefel, 7 time TdF participant, winner of a stage in the Giro D'Italia and teammate of Greg LeMond back in the 1980s for the 7-11 team was on the ride. As he cruised by me in a group, he politely mentioned to me that I had a bit of a faucet coming down from my nose. I politely noted back that after a massive amount of chemo I had no nose hair and it's pretty hard to keep snot in your nose when you're riding in 40 degree damp weather with no nose hair. He chuckled, I chuckled, and so closes what will probably be my closest connection to cycling at the highest levels. And the wheels continue to roll...

Saturday afternoon we recharged from the cold weather, did a few chores and then I rallied to cook us spaghetti and salad. Not complicated but again, it feels great to be able to do these little things when last month I couldn't do any food prep and wasn't very interested in even thinking about food. We then did one of our favorite things which is catching some good sci-fi (Dr. Who, who gets to see the Tardis in the body of a human woman, whoa..) and snuggling on the couch. Now that's a Saturday!

Today I was planning on doing a mountain ride with my DCTBL buddies but the weather was a bit borderline so we called the ride. It managed to dry out a bit here in Boulder County so I got out for a 27 mile ride over to Erie and back. I worked pretty hard and was quite whipped by the end of the ride. One of the nice things about riding by yourself is that you can go as slow or as fast as you want, stop when you want, etc. without feeling group pressure. Group rides are great for the camaraderie but for simple training purposes I think solo rides are hard to beat. I've still got a long way to before I'm back to what I think of as normal but things are going in the right direction so I'm determined to keep working, listen to my body and be patient while I heal from the assault of the chemo.

BTW, they had a conference on lymphoma in Denver last month and I got a chance to look at some of the slides from the presentations. They describe the stem cell transplant for Hodgkins as "an excuse to give someone a ridiculous amount of chemo." I think that makes me feel good about the treatment I received but it also leaves me a bit ambiguous about the whole process. My gut reaction was basically: "huh..."

Well, that's the weekend update. Tomorrow it's back to work. I think I'll start doing Monday yoga with Susan as I'm feeling pretty tight from all the sitting around I was doing last month. I think this will help me feel better and improve my bike riding, too.

BTW, the next big athletic event I'm planning is participating in the 24 hr. eRock mountain bike ride. Info is here. Basically an excuse to stay up all night with your friends, ride bikes, camp out and do something fun and slightly silly. I'm not sure how well I'll do; I'm not so worried about the riding but more about the lack of sleep. I'm still really digging naps and my body may not be real excited about not getting sleep. We'll see how that goes.

ps. My head hair is slowly starting to wake up. Here is a scary picture of my chin, complete with goat-like white hairs. These weren't there 2 days ago so this is quite exciting news! At least, to me :)

Tuesday, May 10, 2011

Not Today

Dressed in white to protect my chemo ravaged skin.
I climb on my bike to dance with Eldorado Canyon.
Site of my first mountain bike ride.
My back yard for 17 years.
She's seen me through divorce, marriage, death and rebirth.
Today she brings out one of her favorite games - the 40 knot headwind.
Ride, or no ride?

Today I have no companions but I think back to my morning in the infusion room. My fellow patient complaining of chest pain.For most of us, chest pain brings fears of a heart attack. For him, there are scarier demons at work. It's likely that his cancer is eating away at his sternum, birthplace of now deadly stem cells.
He carries candy with him everywhere to ward off the casual cough that would bring him agony. His life is probably measured in months. So of course I choose to ride.

On the flats, into the wind.
5 mph, heart rate 155.
The wind is strong, noisy and full of life.
A walker comes the other way and says "Gotta love the wind, eh?" And I think - yes, I do love the wind. The sun highlighting the mountains. The yelling wind making the tall grass dance. I think back to my chemo buddy. Is that my future? Hobbling around with a cane, candies to ward off a cough, hoping that I've had a heart attack because the alternative is worse?
And I think - not today.

Today I tack the  mighty Ibis uphill, into the wind. I get into the shoulder of the canyon and she welcomes me into her arms. The canyon will be here long after I'm gone, whether I'm done in 5, 15 or 35 years. As I climb up around the corner, I feel her strong voice again, howling through the trees and the rock walls.

"More work" she says. "If you want my soft pine forest and to be hidden from my roaring wind, you must do more work." Or turn around now. No one will know but me. Turn around or not. Go forward into the wind or not. The universe doesn't care. Only I care. And I choose to go forward. Today my legs are stronger then they were yesterday. My blood is healthier than it was a week ago.
Today I choose to go forward.

The medical community has given me its alphabet soup of treaments. ABVD, ICE, BEAM. SGN35. 4 protocols, 33 infusions, 15 months. Working, scratching, clawing for life. But right now, the only thing I need is to be here, in the mountains, nestled up in the canyon.

I get into the trees and God is waiting. Some people see God in big cathedrals made by man, or see him through the writings of people thousands of years dead. For me, I see her waiting in the trees. The light dapples through the pine trees. Soft dirt underneath. I hear her roar overhead but in the forest, everything is still. The trail is soft and winding and I flow along it. I see the remnants of a past forest fire and the rebirth that always comes after the fire. At this moment, everything is simple and happy and joyous. I get the smallest glimpse of everything that is good and right and beautiful. My mind is quiet and she has given me the simplest and most beautiful of gifts - awareness.

I'm up over the highest point in the trail. The wind starts to blow at my back, the trail flows downhill and I'm released from all the work and effort of climbing. I think back to the needle in my arm this morning. It could be life saving or it could be nothing. Double-blind I think, and laugh. A medical term that pretty much describes what we do in life. Is this decision good or is it bad? Should I do this or that? Does it matter or not? I laugh at how so many of our decisions don't seem to end up meaning much. And the canyon sends me another lesson. A big gust of wind pushes me toward the edge of the trail and a steep descent into rocks and brush and unhappiness. "Hey, stupid", the canyon says to me. "Some things may not matter but if you want to get home with all your body parts in their current positions, steering your bike DOES matter. So get your head out of your cosmic ass, get back into the moment and flow down this beautiful trail. Because if you don't pay attention, I will bitch slap you into next week."

Got it. Pay attention, today is real.

I may end up like the guy in the infusion room. But Not Today.
I may end up making bad decisions. But Not Today.
There may come a point where I can't get up to these beautiful places that the goddess has created for us. But Not Today.

Today I have everything. The goddess awaits me in the mountains and my soul mate and human goddess awaits me at home. Today I have everything and it is all I could ever want.

Today is Everything.

Monday, May 9, 2011

SGN35 protocol start

Today I'm down at the infusion center starting the clinical trial. Because my ANC count is now pretty good (2500) I'm in the common room and not in a private room. I kind of like this vibe better. It always perks me up a bit to see other folks that are going through roughly the same thing. And when you hear the stories of other folks it helps put my issues in perspective. A guy next to me this morning is on Vicodin and Oxycontin for pain and his cancer is spreading through his bones. It's now in his clavicle and coughing causes him lots of pain. So he is basically screwed. Pretty sobering...

In my world, my body had a great week. My red blood cell counts went up 12% in 4 days. Pretty amazing! Susan and I got out for a 31 mile bike ride yesterday. It was pretty slow but the fact that I could do it at all is testament to the fact that I'm getting back to normal. I also had a hard but fun mountain bike ride on Wednesday.

As always, my wonder woman is here to help me out:

It's been pretty boring this morning, just waiting around to get through the bureaucracy of the research program. Hopefuly it will go faster in subsequent weeks; I've been here over 2 hours and have not started the treatment yet. Thank heavens for portable computing devices!

So that's the quick update. Feeling good, a bit anxious about how this next set of meds will make me feel but ready to dive in and get things going.

More news as it happens!

Sunday, May 1, 2011

checking in. Back to work tomorrow, SGN35 clinical trial starts Friday

Hey, all. It's been a few days since I posted so I wanted to give you a little update. Things continue to go pretty well as I s-l-o-w-l-y recover my strength and overall mojo. Following Wednesday's brief ride we decided to put the hammer down a bit and ride Jamestown from the Greenbriar:
It was pretty much a cake walk for Caitlyn and a death march for me. But in a good way :) We had fun enjoying the scenery up the canyon. Warm weather, no wind, very little traffic. Caitlyn had never ridden that road before so it was great to share that experience with her. She was really funny on the ride - at one point she said to me: "if the pace is too fast, just let me know." And I said: "Well, if you're talking and you turn around and there's no one listening to you and I'm 30 yards back down the road, the pace is too fast. Because you know that given my personality I am definitely NOT riding back there because I want to - it's because I HAVE to." It was fun to see her just power up the small inclines on the new Dolce. That is, until my hands and feet started tingling from lack of O2 and I had to stare down at my handlebars to keep from falling off the bike. So, good ride, good sense of accomplishment and no lasting damage! And hopefully my body took the stress, healed up and got just a bit stronger.

Friday was pretty much a recovery day. I thought we might get a little mountain bike ride in but the weather turned a bit nasty and I was feeling pretty wrecked after the Jamestown ride so I ended up just hanging around the casa for most of the day.

Yesterday we got Caityln over to the airport for her return to Bozeman and spent the day doing chores. I then started thinking  - wow - on Monday I have to actually GO TO WORK. What's up with that? Much as I like my peeps at Flatirons the idea of actually going into work for 5 straight days in a row is pretty overwhelming. Shouldn't I just get, like, a year long paid vacation for having survived a stem cell transplant? Apparently, society says no. So I'm back to doing the wage slave thing on Monday. I've made it through the last few days without a mid-day nap so I think I have the energy to be back in the office. And it will be nice to see those beer tokens start rolling into the bank account 2x/month.


This morning we got out for a bike ride - I did a 10 mile loop around Louisville and East Boulder and Susan did a bit of a longer route over to Boulder and Marshall. I've decided to limit my work rate to keep my heart rate < 170 so I had to back way down going up the SBR hill. It's kind of a strange feeling - with my O2 carrying capacity low, my heart decides to pump away like crazy even when I don't feel that tired. If my recovery is similar to what I experienced in the fall my heart rate during exercise will gradually come down as my O2 capacity increases and with that increase, I'll get faster and more fit.




The next big milestone on the medical front is Friday morning, when I start a 24 week run in a clinical trial for a new Hodgkin's drug, currently named SGN35. It's a phase III clinical trial, details are here. I'm pretty excited about being in this study - the folks at CBCI were involved in a phase II study with this drug and saw really great results. They'll take about 300 people into this trial, from 29 sites from all over the world. CBCI is the only place in Colorado that's participating in the study - these guys are real rock stars in the lymphoma world. I'll go down there once every 3 weeks and get a 1/2 hour infusion that will be given peripherally (no central line). The side effects are supposed to be very minor and it does a great job of hunting down random malignant cells so hopefully this will be the final coup-de-grace on my slightly messed up immune system. It's a double blind study meaning that I might get a placebo, which kind of sucks. But that's the cost of getting into the program because of course, no one would actively choose to go through the process and get the placebo. So I won't know which I'm getting although I suppose that if I see absolutely no side effects that it's probably a placebo dose.

Having said all these great things about this trial, I'll have to admit that at some level, I'm really quite bummed about the whole thing. I just want to be HEALTHY, NORMAL and NOT GETTING SHIT pumped into me. Another down side is that I need to get some more CAT scans to participate in the study. CAT scans give you a pretty big dose of radiation and I've had 5 in the last year so that's another risk I'm taking on. So at some level the whole thing sucks. But I would really feel like a dumbass if I missed out on this opportunity and I ended up dying from this damn thing and I skipped a treatment that could have saved me because it was kind of inconvenient. So I'm in and I will wear my happy face and make the best of it. But just between you, me and the blog, the whole thing is turning into a major PITA.


Well, that's the update for now. I'm pretty much out of bubble boy mode now so for those of you that live in the Boulder/Denver area, I look forward to catching up in person over the next couple of weeks. Happy May Day!

Thursday, April 28, 2011

The new immune system takes a spin on the bike

Yesterday I had my blood counts tested and my platelets had gone up from 33 last Wed to 119 yesterday. Yoo-hoo! Minimum count for bike riding is 50 so I am now officially blessed to ride the bikes in public again. Quite a milestone. We also added a new member to our family yesterday, celebrating Caitlyn's graduation from grad school and her birthday:




The Specialized Dolce Elite will soon be ripping up the roads around Bozeman, MT. As a break-in ride and celebrating my return to biking we got out for a short ride around Louisville:
Louisville short course


Hematocrit is still only about 70% of my normal so I've got a ways to go before feeling normal on the bike. But boy, it REALLY felt good to get out and ride my book and have it actually move :) 

Following up on the wicked 7 mile ride, we kept it local and hit the Lucky Pie for nuts, olives, pizza and beers. Still not ready to really hit it hard on the alcohol front but I can now drink one beer and enjoy it. 

All in all, a pretty awesome day. Looking for a lot more of these to come!

Sunday, April 24, 2011

Coming Back to Life and a Shout Out to My Girls (by Susan)

Easter seems to be an appropriate time to talk about coming back to life.  No matter what your spiritual beliefs, this is a season to celebrate renewal and love.  George and I are both beginning to feel those twinges of new life, just like the green shoots that are nudging their way up in the front garden that we planted last summer.  During the weeks leading up to and just after George's stem cell transplant all we could think about was making sure George didn't get an infection, monitoring his blood counts, driving back and forth to the hospital every day, keeping the house spotless and preparing germ-free meals (and, in George's case, keeping the meals down!).  So, now that he's made it through the process and things are going well, other parts of us that had been put on hold are now waking up again.  And just like when hands or feet fall asleep and you get pins and needles when the feeling starts coming back, some of this waking up process hurts.  Both of us realize that we will have emotional repercussions from this long after the physical scars have healed.  You just can't come that close to the brink of life and death without it affecting you. 

As I wrote in my last post, my first reaction was one of just wanting to sleep a lot.  Then, after that cleared up, I decided to take advantage of several offers of nurturing and fun for the Caregiver - that's me :)  So, last week, I enlisted the aid of my girls to do some activities to start getting myself back into the world. 

First, I biked with my Tuesday night Chicks on Bikes group.  We had a great time and it just felt so good to work hard biking uphill and then get the reward of screaming downhill at the end and yelling as we came into the parking lot.  Then we had dinner and we had some great laughs and catching up over Indian food.  So THANKs  to Karen, Amanda, Robynn, Joan, Sherrie, Vera, Dana, Sue, Suzy, Kate, Karen L., Gina and all the rest of the Chicks on Bikes.  You rock and help me to stay sane.  

On Thursday George and I did a hike at Roxborough park with some of my dear friends from my Coors days - Kris, Chris, and Gen.    We had a wonderful time in the sunshine, talked a lot, and got some nature exploration in there.   These women have stood by me through thick and thin and all the ups and downs of our lives over the past - could it be -25 years?  Wow.  They also helped clean out my kitchen cabinets and get the house ready for our "bubble boy" before his transplant.  Now THAT's friendship. 

Then, on Friday I took the biggest splurge of all and had a spa day at the St. Julien with my dear sister Celia and my oldest friend Nancy (we have known each other since college). These two, along with Kyle,  were the backup caregivers for George - helping us with food shopping,  "babysitting" George on a few occasions so I could go out, giving us lunch, etc.  I got a massage, a facial, and a pedicure and totally pampered myself.  It felt so good I almost cried!  And thanks to George for supporting me in spoiling myself a little. 

SO - I realized that this whole process of getting George better has required a veritable army of support people, in addition to the team of doctors, nurses, apheresis specialists, lab technicians, x-ray technicians, etc. who have worked so hard for us over the past six weeks.   We know that we could not have done all this and could not have survived without our friends and family.  And, in some ways, we know that the research scientists and doctors who work so hard to some up with these amazing treatments also are motivated by a love of their fellow human beings and a desire to make a difference in people's lives.   This is what they mean when the cancer centers say that "love heals".   

While I'm thanking people, I'd also like to mention the Ojo Girlz for their offers of support, and Carolyn and Scott and also Carlin cleaning out our garage and also our yard.  Scott and Carlin, while not girls, are also great friends.  And many thanks to Kyle for his strong, silent type support and being the relief pitcher when I HAD to get out of the house.  And also thanks in advance to Caitlyn for flying in this week to take over so I can go back to work without worrying about it. And one final shout out to Danielle and the team from Flatirons for the Team Geo Love website, presents, food, and other "vegan" libations.

Tomorrow I go back to work.  The time has gone very quickly and I'm glad I could be there with Geo every day during this part of his journey.   It's going to seem strange to be back in the office, but life goes on and we do need to pay our bills (isn't that funny how that never goes away as long as you are alive?).   I know I'll miss my daily interactions with Geo, except for the times when he criticized my driving.  Now he's cleared to drive himself, so look out everyone in Boulder and Louisville!   But again, a big THANK YOU to my girls (and boys) - we couldn't do it without you!

Wednesday, April 20, 2011

Day +23 - graduation!

Today I graduated from the transplant program. Yeah! Everything continues to go well. All my counts continue to go up. I'm getting one more bag of platelets this morning to get me up over the magic 50 number which means I will also get my central line out today as well. It will be another few months of being very careful about getting exposed to infections so I'm not back to being completely normal in terms of immune system function. The chemo really blasts your bone marrow so even though I've gotten back my own stem cells my immune system is still fragile because of the damage done to my bone marrow bye the chemo. Looks like I'll be able to get back on the bike late nex week which will be really awesome.

The nurses were a bit concerned when I reported that my heart rate was 172 after my run yesterday. So maybe a little more caution on pushing the cardio engine is in order. Te other big freedom enabled is that I've been cleared to drive! That'll be huge.

Mnaih!

Tuesday, April 19, 2011

Day +22 - bike dad

We've all heard of soccer moms  - throwing the kids, gear, folding chairs into the car and trundling everyone over to the soccer field to watch the great machinations of youth soccer games. Today I did the biking equivalent of that and was a bike dad. Susan and I packed up her road bike and we went up to NCAR in South Boulder. This is a nice road for doing hill work. It's got a 2000 meter long climb that climbs about 500 vertical feet with grades of from 3-8%. You can do as many as you want, as hard as you want and regroup at the top with other folks in your group. This past winter they made a bigger breakdown lane on the uphill side of the road so the road is extremely bike friendly. We timed our outing to coincide with our Tuesday work lunch ride. I perched a folding chair at the top of the climb in the NCAR parking lot and cheered on Kevin, Tony, Bob and Susan as they did their hill work. In between bike sightings, I got to enjoy the chaos of watching elementary school kids on their field trip go all jihad on each other during their lunch break. Gives you a renewed sense for how much work elementary school teachers do! Anyway, it was great to see the guys from work and support Susan as she starts up her training for the Copper Triangle in August.

This afternoon I did get out for a small run. Double the distance from Friday and almost a min/mile faster. So quantitatively I'm definitely improving! And today is the first day that I think I'll make it through the whole day without a nap. Woo-hoo! Not that naps aren't great, but when you have to have one to get through the day its a bit of a drag. Oops, here it is, 2:30 in the afternoon, feeling like crap, guess I need a nap. Today I managed to get through that period ok - another big milestone to get ready to rejoin the land of the living. I seem to remember that most adults can actually make it through the work day without napping so that's my goal!

Tomorrow we're in early to see the doctor, get my blood counts and hopefully, graduate from the program and get my line removed. I certainly feel better every day so I'm cautiously optimistic that we'll get released for more activities after tomorrow.

That's it for now! Off to watch some soccer on TV and rest up after my grueling .98 mile run :)

Monday, April 18, 2011

Day +21 platelets have engrafted

Yeah! The final piece of the blood chemistry puzzle is falling into place. My platelets are at 21 this morning, up from 16 on Friday. My whites are down some this morning, but that's a normal reaction to getting off of the Neupogen. Reds are up a bit as well; my crit is now up over 28, from 26.5 on Friday.

Our next checkup is Wed morning. If everything is still going in a good direction I'll get my line out and graduate from the program. We have lots of questions about when I can start doing a wide range of activities, so we'll talk through all that on wed. with the nurse. In the interim, just doing the slow, boring but necessary work of recharging the engine. Today we're looking to get a hike in up in the foothills somewhere.

That's it for now. Kind of boring, which is a good thing!

Sunday, April 17, 2011

Day + 20 - a good weekend (by Susan)

Thanks to Geo's rising blood counts, we had the weekend off  and did not need to go to the blood center or to the hospital - yay!  His while blood cells are now within a normal range, his red blood cells are going up, and his platelets are still low but they are typically the last thing to rise.  The doctors and nurses at the blood center couldn't believe that he actually was running last week (as compared to many patients who can barely walk to the mailbox at this stage).  On Friday when we went to the blood center they were taking bets on how far he ran that morning (that was the half-mile day).    So, only have two more appointments this week.  George's exit interview is planned for Wednesday, when he is also scheduled to get the port out.

George is no longer getting IV antibiotics, IV anti-nausea medicine, IV fluids, or any other IV meds.   He is feeling better and better each day.   The doctor told us that he basically has the immune system of a newborn baby right now - all of his previous immunities to measles, mumps, chicken pox, smallpox, flu, etc., are gone.  So, he will need to get re-inoculated against these childhood diseases.  Isn't that crazy?  So, while he has normal white blood cell counts, he basically has not immunity to anything, that's why he still needs to be really careful about being in group situations and being around anyone who is sick with a cold, flu, or anything else.

George is starting to get really antsy - sick of being in the house, sick of not being able to drive, sick of not being able to ride his bike outside.  This is a very good sign because there was nothing worse than seeing him lie there completely wiped out and nauseated, and not wanting to do anything. I have never seen George like that before and it was very heart-wrenching, not to mention scary.  So, I will take antsy and ornery Geo any day of the week!  We will find out during the exit interview how long it will take to resume normal activities.  We are making a list of things like, when can we eat out, when can we visit friends, when can we go camping, how long do we have to maintain the nutrapenic diet,  how long until George can take an airline flight, etc., etc. 

A funny thing happened to me last week.  When we knew for sure that George was out of the woods and he was on the mend, I suddenly became very, very tired.    It was last Thursday, and all I could do was sleep the whole day.  I must have taken about five naps and had no energy at all.  On Friday I started feeling better, and now I am getting back to my normal energy level.  But I just didn't realize how exhausted I was by this whole thing. 

I can see how people need to find their "new normal" after going through cancer treatments.  Even after the physical scars have healed, I know it's going to take some doing to get both George and me back to feeling mentally and emotionally the way we used to - if that ever WAS normal!  However, I'm not going to worry about that now - I'm just going to enjoy having my feisty, opinionated, dancing Geo back again!

Friday, April 15, 2011

Day +18 - on the way back to the world

Morning, all. Day +18 and we're back in the doctor's office for a short visit to check my counts. My whites are still going up, reds going up, platelets still edging down a bit. Hopefully by Monday my platelets will start coming up. I've got to get to a platelet count of 50 (I'm at 16 right now) before I'm free to do things like ride my bike or drive a car so that's the next big milestone.  Everyday I'm feeling a bit better and I am starting to approach feeling "normal" - whatever that means. The current schedule is that I'll get my line removed next Wed and will graduate from the program. Yeah!

This morning I felt chipper enough to do a run. 1/2 mile at a whopping 14:58/mile pace. Whoa! Brisk walkers will exceed this pace but it was the first sustained run I've done in a month so another big milestone. My heart definitely noticed the work - I was close to 170 by the end of the run. Here's the graph of this baby workout (click the image for a more viewable version):

And I liked the juxtaposition of 3 Teat Pete and the heart rate monitor:


And while we're on the subject of slightly inappropriate body pictures, here's what happens when you get  a shot in your tummy and your platelets are at 8:





I've finally started to get some taste and appetite back. The simple pleasures of enjoying a bowl of cereal are now mine to savor:


Well, that's it for today. Off for a walk with Susan and then back to the casa for some coding. Happy Friday!

Wednesday, April 13, 2011

day +16; fuck, yeah!

Oops, sorry for the potty mouth title to this post. But that's basically the way I'm feeling today. Like, fuck yeah, I'm getting my mojo back! A big milestone today in many ways. Let me count the ways today has been awesome:

  • ANC is up to 3200. This is well inside the normal range of 1500-7000. This also means that today was my last shot of Neupogen. Neupogen is one of the wonder drugs that is great in what it does (boost WBC production) but not that much fun to take - makes me feel like I have a mild case of the flu. So getting off of the Neupogen is huge and having such a big jump in ANC (was 1880 yesterday) is another strong sign that my bone marrow is rockin' and rollin'. 
  • Today is my last day of antibiotics. I've been getting infused 5 times/day with antibiotics, which pretty much sucks. So to be done with that is another huge sign that our lives are starting to return to something like normalcy.
  • RBCs are up. Today is the first day in weeks where my red blood cell population has increased. Another good sign that my bone marrow is recovering from the chemo. Plus, low RBCs (aka anemia) make you feel like shit. Sort of like hiking uphill at 20,000 feet with a bad case of the flu. 
  • We get a day off tomorrow! For the first time in 26 days we don't have an appt at the blood center or hospital. Gee, what will we do with our time? Oh, yeah, how about living life? Yeah, let's do that.
  • Next week I get 3-teat Pete out - probably Wednesday. It's been awesome being able to have all these things go in and out of my bloodstream without getting stuck with a needle but having a 3 port central venous line hanging out of your chest is a very obvious sign that you are in the middle of a medical shit storm. So Pete's done a great job but I'll be happy to get the little three headed hydra out of my chest.
  • Headaches are gone. I've been getting some pretty nasty headaches and apparently this can be caused by one of the anti-nausea meds I've been on. We've stopped the Kytril and - whammo! - no more headaches. Kytril can also cause constipation so getting rid of the headaches and also getting my plumbing to flow a bit better are two huge steps in the right direction.
  • I feel BETTER. Today is the first day in a month where at times I've pretty much felt normal. No headaches, reasonable energy, no nausea, appetite improving, GI tract happy. I got out for a quick walk this morning, did a brief spin on the bike and am planning on a longer walk here this afternoon. 
  • Felt so good at lunch that we had an impromptu dance session when Van Morrison's "Brown Eyed Girl" came on the radio. This has been a favorite song of ours (I bet you can guess what color eyes Susan has :) and it was great to feel good enough to bring the Geo-dance (complete with T-rexxing!) out for a brief practice session. And then I immediately started crying. Tears streaming down my face. I feel like I've been under water or submerged in illness for the last 3 weeks and to feel like I'm coming back into the world is incredibly powerful. Couple that with a favorite song and dancing with your sweetie and if that doesn't make you cry, you don't have a heart. At least that's my story and I'm stickin' with it!
So, yeah, it's been a good day. I'm looking forward to another 10,000 good days (that would put me at about  80 years of age) and the work over the last month is setting me up for a good long time in this space, with loving friends, family and lots of trails still to mountain bike. And to quote one of my favorite movies, "So I got that goin' for me, which is nice".

Tuesday, April 12, 2011

Day +15 - I am a blood doper and it feels good!

Morning, all. Today is day +15 and things are continuing to improve. Yesterday my ANC was about 1100, almost double from the day before. Yeah! But my hematocrit was down a bit more (23.5) so we decided to top off my tanks with 2 units of red blood. Each bag is about 90 minutes of infusion and I also got a bag of platelets (another 30 minutes). So it ended up being a pretty long day at the infusion center and hospital. We had an 11:00 am appt yesterday and didn't get  home until about 7:45 pm.

The transfusion was uneventful and I almost immediately started feeling quite a bit more chipper. My entire body has been really working to keep things going with my reduced # of red blood cells so everything started feeling WAY better as I got the new blood. It's really amazing, cool and wonderful to think that someone donated these red blood cells that are helping me get better. So this is a big shout out to all of you that donate blood. As a recipient of both platelets and red blood cells I can say without exaggeration that these blood products have saved my life during this process. Without them my organs would probably start leaking (due to low platelets) and at some point I would  have some serious cardio/pulmonary/cerebral event (due to low red blood cells). So I'm a very concrete example of the benefits that come from  your blood donation. So thank you, thank you, thank you!

With my new red blood cell volume I had a really nice, relaxed sleep and got out for a walk this morning. We threw in a few 60 yard runs during the mile long walk. I  haven't run in about 3-4 weeks so although I was immediately gassed it sure felt good to have enough energy to even run a little bit.

It's not clear if my bone marrow is healthy enough yet to keep up my red and platelet levels or if I'll need more transfusions as I recover. It appears that the priority of your bone marrow is to get your immune system healthy (through white blood cell production) and then work on generating reds and platelets. Platelets don't live very long (3-5 days) so if you're not making enough you can run low fairly quickly. So I may have more platelet and red blood cell transfusions down the line in the next couple of weeks.

Our appt is at 1:00 this afternoon so we won't know about blood counts until about 3:00 pm or so. If things continue to go up I'll probably be able to stop one of the antibiotic infusions today. That will make things easier logistically as we'll go from 5x/day infusions down to 2x/day.

Ok, that's the update from the salt mines. More news as it happens!

Sunday, April 10, 2011

Day 13 - ANC > 500, yeah!

Day +13 and counts continue to go up. My ANC this morning was 570, which is very cool. 500 is a bit of a milestone; if you're less than that # you're seriously at risk for getting some nasty infection so getting above 500 is a big milestone (yesterday I was at 270). Red blood cells and platelets have not yet started to climb but I've so far avoided a red blood cell transfusion. My crit this morning was 24.8 (normal for an adult male is 40-50) so I'm still feeling the effects of low crit but things continue to go in the right direction. We're hopeful that tomorrow we'll be able to stop doing the IV antibiotics. I'm getting 5 infusions a day for antibiotics - 1 in the clinic and 4 at home. It's a major PITA so it will be great to get that off our plate. Our first infusion starts at 5:30 in the morning and the last one finishes about 11-11:30 at night so it makes for a long day.

I'm also continuing to really dislike neupogen. It's helping my immune system reload so it's A Good Thing but it's giving me major sinus headaches. At times I feel like I have a hot poker sticking into my right eyebrow and other times it manifests itself as throbbing pain at the base of the back of my head, just above my neck. But these are all good pains, indicating that my immune system is rockin' and rollin'. So I'm trying to grin and bear it but I'm certainly ready to be done with this part of the journey.

Today we got out for a nice walk around old town Louisville and looked at some neat houses. There are a bunch of fun streets in Louisville where folks have upgraded little bungalows and it was fun to see what people have done with these properties.

One other fun and super geeky thing we did today was to play network scrabble against each other. We were at the infusion center, playing each other over the Internet. Another great way to waste time while I sit in the big chair and get dosed with fluids and antibiotics. Today was the 26th day in a row I've been down to the hospital or clinic so I'm really looking for the matter transporter to get me there but so far we've been stuck with more conventional means of transport.

Ok, that's it for now! I wouldn't say that we're out of the woods yet but I think we can see the edge of the forest from where we're standing. Another few days  of clean living and we'll hopefully be over the top.

Thx for checking in! Hope you're having a good weekend, and remember that One Fun Thing a day is a good way to live life :)

Friday, April 8, 2011

engraftment, baby!

Day +11 and I'm happy to report that my bone marrow is starting to produce new white blood cells. My ANC is now 0.1, WBCs are 0.4 and we're heading in a good direction. I got a platelet transfusion yesterday afternoon to keep me safe and may get a red blood transfusion over the weekend. But with an ANC > 0 and 2 days in a row of my total WBC count going up we can conclude that my bone marrow is back in business. I'm still not feeling like running any wind sprints since my RBC #s are all pretty low but this is definitely a major milestone.  Now we're just hangin' in there, being healthy, waiting for my immune system to continue to wramp up. When my ANC > 1.0 for two days I'll be able to stop the antibiotics which will be a big step logistically, since I spend about 4 hrs/day getting infused with the antibiotics.

So it's a happy Friday at the infusion center. More news as it happens!

Thursday, April 7, 2011

counts are starting to creep up

Day +10 this morning and I just got back my lab results. My WBCs  and RBCs are both starting to tick up a bit. Platelets are down and the real indicator of immune system health (ANC, which measures a type of infection fighting white blood cells) is still basically at zero. But the fact that some of the markers are edging up mean that  I think we've reached the bottom and are now starting to climb up to a more normal blood chemistry. Yeah! The only bad part of today is that they're giving me a drug that stimulates white blood cell growth in your bone marrow (Neupogen) but it makes you feel like you have the flu. So although my temp is normal I feel a bit feverish, achy, etc. A very reasonable trade-off - grow white cells faster vs. a bit of physical discomfort - but it's still another straw on the back of the Geo medical camel.

Well, that's it for now. I'll finish getting my normal set of fluids and electrolytes and then pop across the street and get a platelet infusion to keep me safe from any sort of bleeding incident. You know, like blowing your nose and having half your blood volume come streaming down your chest. Or sneezing and having a similar reaction. Or coughing and trigger some crazy pulmonary/esophageal bleeding incident.  You know, little things that yeah, you might be ok with for fun but to keep it boring you probably want to avoid :)

Wednesday, April 6, 2011

Day +9 - Starting to feel more cheerful (by Susan)

Today both George and I are feeling more optimistic and cheerful than we have been.  George's counts still have not gone up - they are pretty much in the basement.  He escaped getting a transfusion of red blood cells by .5 today (his red cell count was 24.4 and he gets a transfusion if it goes below 24).  So we had a relatively short day at the blood center.  However, his stomach and mouth are starting to feel a little bit better.  George actually ate a normal breakfast and lunch today, and while he didn't enjoy the food, at least he didn't feel like throwing up when he ate it, which is a lot better than he has been doing.  The doctor told us today that it's possible his immune system is starting to come back, but it's working on his stomach and mouth first before going back into the bone marrow.  The bottom line is that George is feeling the teeniest tiniest bit better, and that's reason to be cheerful. 

The infusions are going well at home.  I have turned from a quivering, anxious wreck into a calm and competent professional in just two days.   I was able to get up at 5:30 this morning and get everything set up so George was getting his antibiotics by 6:00, no sweat.  But I do have even more respect for the infusion nurses who do this job so calmly and cheerfully.  They are real rock stars, in my opinion.  We are getting to be friends with all of them. 

They have a support group for transplant caregivers at Presby St. Luke's once a week - it is run by a staff psychologist and a young intern who's in psychology graduate school at D.U.  I always feel better after going to this because it gives me a chance to see that everyone who gets transplants goes through probably the toughest time in their lives.  It helps to feel less alone in this.  You do hear about all kinds of crazy things happening from the support group - like the guy who got up and stepped on his infusion line and yanked it out of his chest and had blood spurting all over the place, people curled up in fetal balls because they are in so much pain, people who are so tired that they have to take a nap after taking a shower, and patients who will NOT follow their caregivers' instructions (that sounds familiar). 

Listening to all of these stories makes me realize that George is doing really well through all this.  He's been able to get out for one-mile walks just about every day, he is still working on his program for the Android, he still has enough energy to joke around with the nurses and tell me he loves me every day. 

I told the Caregiver Support group about Josh's idea for "One Fun Thing" each day, and it really resonated.   So, Josh, you have started a movement!  All over the city we have people trying to find One Fun Thing to do.  Today our One Fun Thing is that George is going to have virtual dinner with his biking boys by using the Face Time application on his new iPad, and Kyle is coming over so I can go to yoga class.    It really helps to have something to look forward to.

Tuesday, April 5, 2011

Day 8 - when a pimple is big deal

Morning, all. Day +8 in our fun filled adventure in growing a new immune system. I'm definitely feeling better today - got a little more bounce in my step, temperature is down, etc. My counts are in general still going down so I haven't turned the corner yet but the antibiotic has reduced my fever and that's made me feel tons better.

So, to a discussion of the title of this post. This morning I noticed a little pimple on my leg. A little red welt that's probably 2 mm in diameter. Now, for all of you cool folks out there with a functional immune system, these kind of skin issues just come and go, no big deal. But when your ANC (a measure of your immune fighting white blood cells) is in the basement, these kinds of issues are not ok! What starts as a minor bacterial skirmish on a hair follicle in your leg can grow into some gross, nasty boil that can make you really sick. So the answer is another IV antibiotic that I'll take for the next few days. I'll get one dose in the infusion clinic and Susan will give me another dose at home. BTW, my mighty wing woman is becoming quite skilled in delivering IV antibiotic infusions. She's now an ace in setting up the drip line, bleeding air from the line, hooking things up in a sterile fashion, getting the drip rate correct, etc.

The next time you get a pimple and it goes away, score one for your mighty immune system. In another few days I should be able to man up and bitch slap any pimples that come my way, but until then, I'll be relying on modern medicine to keep my skin (and the rest of me) relatively healthy.

Yeah antibiotics! Yeah, life!

Sunday, April 3, 2011

Day + Six - are we at the bottom yet? (by Susan)

We are now at day 6 after the stem cell transplant, and George is definitely at a low point.  His counts have dropped very low - close to zero for platelets and white blood cells, although red blood cells aren't quite as bad.   George woke up at 5:00 a.m. this morning with a fever of 100.6, and the doctors told us to call the blood center if it got above 100.5, because this could indicate infection.  So, I called the blood center and the doctor on call told me just to give him some Tylenol and come in for our regular appointment at 8:00 a.m.    On the weekends we have been going to the Presbyterian St. Luke's infusion center because the Blood Center is closed.    When we told them what was going on, the nurse said, "OK - this is First Fever", as if it is a very common occurrence.   She got him on an IV antibiotic (they actually administer it through his port) right away, and took some blood samples to be cultured to figure out if it is an infection or just what they call  a "neutropenic fever".   The doctor doing rounds today told us that each transplant is unique, and they have to be prepared for all kinds of crazy stuff happening.  Since George has no capacity to fight infection right now, any bacteria circulating in his system, even from something as simple as brushing his teeth, could potentially cause a fever. 

I guess fevers in transplant patients are pretty common, though, because before we even started this process they made us sign a contract with a home care company who delivered a box of antibiotics and tubes for us to keep ready at home.  Today I was told that I would need to administer IV antibiotics to George three times a day at home.  So, I learned how to mix the antibiotics, how to hang them from a pole that we have at home, and how to get them going in a line right into George's port.  I also have to flush the port with saline and heperin.  Yikes - that is a lot for a person who definitely NEVER wanted to go to med school.

So, while George was starting to feel a little bit better yesterday, today has been his worst day yet.  He has been extremely tired and it has been difficult to get him to eat anything.  At least I got him to drink a big glass of Gatorade tonight.  I have to give him the antibiotics tonight at 10:00 and again at 6:00 a.m. tomorrow.  I hope these start doing the trick.  We should know more when we get the culture back tomorrow. 

We're just counting the days until engrafting takes place and Geo can start feeling better again. 

Friday, April 1, 2011

How much Geo to share?

Morning, all. Down at the transplant center this morning and just finished having an interesting conversation with the team of doctors. As part of the transplant process I've signed up to be part of a clinical trial that looks at the cross compatibility of my progenitor stem cells to be genetically enhanced to act as a source of uber cells that could be used to help other patients. As everyone knows, Italian stem cells are incredibly robust and mine have been tempered down through the generations with a healthy cross-dose of other pan-Euro stem cells from my ancestors in Ireland, Scotland and Austria. Over the past week they've been evaluating my cells and have come to the conclusion that I have the best stem cells every seen in someone that's descended from European ancestors.

But here's the big catch - if they give my stem cells to other transplant patients, there will be side effects. Because of the strength of my stem cells, they will do some genetic remapping of the recipients. The most likely changes to the donor are a bigger nose, louder voice and a tendency to blurt out inappropriate comments at social gatherings. Also a creeping desire to wear socks with flip-flops.

So the big moral question I face is dare I unleash this on the population? Of course if it helps save peoples' lives it would seem like a reasonable trade-off but I think there are some subtle karmic questions here. Do we all have different paths to enlightenment and would I be corrupting someone's path by letting them get the uber Geo cells? This could be a Pandora's box - once my little guys start getting out into the greater population parties may never be the same. And the fashion implications are really too terrible to think about...

It's a tough decision that I've got to grapple with. Luckily this seems like the perfect day to think about these deep thoughts so thanks for allowing me to share my dilemma. Let me know what you think!