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!!!

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!