Radiation seems unlikely

Yesterday would've been my first "dose" of radiation.  However, my radiation oncologist cancelled all my appointments.   He called two weeks ago wanting to tell me my PET scan was clean.

I asked what that meant.  It was the third phone call in 2 days to tell me as much, but I wasn't sure what it meant.  Or rather, I thought I did, but wanted to hear it.   What medical oncology called "remission," he called a "Complete Response."   We had expected a bunch of scar tissue from so much tissue, but I had very, very little.  This was completely unexpected after much discussion with oncology and even my surgeon.

The radiation oncologist told me he wanted to make an appointment to sit down and talk to Sarah and I soon, which was last week.   When his schedulers called to verify the appointment, I found out he had cancelled my other simulation and all my radiation.   Clearly he was serious.

We talked last week for about an hour in his office.  He had initially planned on the radiation (obviously) and laid out all the trials for us.  It wasn't a SURE thing at that point, but pretty sure.  The data gave just enough wiggle room that if I absolutely didn't want it, I could probably have gotten out of it with him, but not my medical oncologist.

This time was different.  Now he felt he would NOT radiate.  The whole hang-up was that I don't *truly* have bulky disease after all. The reports in my chart say "bulky" but the unfortunate thing is that actually means something specific in radiation oncology, and they should have just said "large."  The criteria in medical oncology was 6cm (mine was 7cm), but his criteria per the studies was 10cm or 33% of my chest (this was about 14%).  Moreover, although my tumor was huge, it was several huge lymph nodes grown together, which he felt changed the picture as well.

In any case, he would do either thing I wanted, treat or not, but if it were his decision on himself, he would not do it. So, I won't. The risks / benefit ratio is just high in his opinion.

Basically, I've got a ~15% chance (or less, since not really bulky) of relapse. If I got radiation, I'd decrease it to maybe 8-10%, but, I had cancer below the diaphragm, and it could recur anywhere. Usually it is the chest, but potentially anywhere. So, radiation marginally decreases the risk of relapse.

However, the risk of radiation on solid organs (think heart, lungs, esophagus) is about 1% per year. So, basically I have to live 15 more years for that risk to tip over towards not doing radiation. I sure hope I can get 15 more years. 

Furthermore, cancer of the lung or esophagus is serious business.  My chance at a cure for a relapsed lymphoma (or leukemia) is better than solid organ, and during the simulation, he decided he would be hitting a big field with a lot of lung.  This made him nervous.  This combined with the bleomycin (the drug that causes lung problems) wasn't the best situation.

So, am I happy?  Well, sort of.  A very tempered yes.  There are big risks on both sides, so this isn't a fun decision to make.  It is why I deferred to the radiation oncologist.

However, I am comfortable with it, since I think it is the best we know right now.  I feel as though this physician did a lot of work and investigating on my behalf and made a lot of phone calls for other opinions.  Either way could go very right, or very wrong.   So, I'm not really "happy" per se, but I'm comfortable.

On the other hand, in terms of instant gratification, I am a little excited.  Basically, I'm done until follow-up in October.  Until then, I'm trying to cram as much fun in as I can.

One Fun Thing: Camping

Cabin-ing, actually.  This past weekend we took the dogs to Dory Hill Campground.  I'd never stayed here before, but I'd biked past it many times, and many times I'd stop in for gatorade.


The dogs seemed to enjoy the time away.  This was Lucy's first trip.   Both dogs most enjoyed getting absolutely filthy in the dirt.

We did some hiking, but mostly just relaxing.  Cooked some camp-out food, had some coffee, and caught up on some reading.  Pharmacy stuff in my case.

We figured the dogs would be really tired.  They were, but not as much as you'd think when we got home.  Still, they slept most of the way.

We got home in time to catch up on some of the Tour, and then I even got a mountain bike ride in that evening.   Not a bad weekend at all.

One Fun Thing: Riding bikes with Lance Armstrong

A good friend of ours sent us this info regarding an event during a weekend we were already planning on spending in the area.

Needless to say, I was pretty interested.   The event details can be found here at Ride 4 Yellow.  So, what about the ride?   The description, from the website, is as follows:

The Divide Trail is an epic Rocky Mountain single track ride following the Continental Divide that will be supported with aid stations and support on course. 

This is a non-competitive ride and the trail is suitable for a wide range of abilities. However, this ride is not recommended for inexperienced mountain bikers. The Divide trail is a challenging but not extreme single track trail. At just under 26 miles, riders will experience moderate to difficult terrain. The ride ends with a fun descent from the top of the Steamboat ski mountain.

If you’ve ever wanted to do this ride now is the time. We’ll have an aid station at Long Lake (approx. 1/2 way) plus support on the course.

As I've posted, I have recently purchased a new mountain bike.  I've been trying to hit the trails pretty hard, and I've had some friends act as great mentors in showing me the ropes.  Still, "challenging" and "moderate to difficult terrain" and "not for inexperienced mountain bikers" are fairly clear warnings.  Despite this, it is not an opportunity I wanted to miss, for obvious reasons.


Moreover, I've been wanting to do this race next year, or possibly even this one.  (The latter would be what we call a "stretch goal" at work).  So a 26 mile ride seems like a great start, and certainly no slouch of a mountain bike ride.  This past weekend's Fat Tire Classic was a great starting point as a test of theory.


What does the course look like?   The photos look gorgeous.  The profile, however, looks a bit scary.  

I'm liking everything up to about mile 16.  Beyond that is what makes me most nervous.  I am terrified of the downhill.   So, what we've established is that we have a challenging course, a big downhill, and a cancer survivor who should be right at the end of his radiation treatment.   Sounds like a recipe for success, right? 


Absolutely no doubt about it, this will be a challenge for me.  Another mountain to climb, so to speak, although more literal in this case than the ones I've had in my lymphoma battle.  Given the circumstances, I'll be doing everything in my power to channel my best Jens Voight.  (Shut up legs!!!)




What else?   Lance's mom will be the keynote speaker at the event celebration.   All of the proceeds from the event will go towards fighting cancer or benefitting those fighting:  Half will go to Livestrong and the other half will go to the LOCAL community of Steamboat Springs for cancer related services. 


In order to do the ride with Lance, you need to raise $500.   I am not soliciting donations.  I've already donated the entire amount myself.  I'm extremely touched and pleased by everyone's generosity towards the Leukemia and Lymphoma society as so many have donated to Dave's Ride for Josh, such that he has achieved 150% of his goal in fundraising.   


However, Livestrong and a local cancer project is still obviously a great cause.  The former is as near and dear to me as LLS, and so if anyone is compelled to give to fight cancer (or seeking to decrease their tax burden), that link is here.  


It is extremely likely I won't even see Lance Armstrong himself.  Besides having a lot of handlers, he'll be at the front, and I'll be off the back immediately.  Despite this, I'm very excited as I anticipate this to be a very cool experience, and certainly one very fun thing.

One Fun Thing: Fat Tire Classic

In an attempt to balance not boring-up this blog as well as still indicating that I am, in fact, doing fun things and living my reclaimed life, I'll try to concisely post about a few fun things as I can.


This past weekend was the Fat Tire Classic up in Winter Park, Colorado. 

We went up Friday night and got there around 8pm.  By the time we were checked in and got the dogs and bikes into the hotel it was almost 9pm, but we did manage to order a couple of salads from the restaurant and bar in the hotel.


Our hotel was great.  We stayed at the Winter Park Mountain Lodge.  

This was a great hotel because (as noted) they let you bring your bikes and dogs into the room, and it was relatively inexpensive, and they had a decent bar / restaurant, although apparently their microbrews left a little to be desired.

The Fat Tire Classic was fun.  We went with some friends from work, and rode the trails on Saturday, seen here.

I'm told we rode around 33 miles with just over 3000 feet of climbing after being out for just about 4.5 hours or so, including stops at the aid stations and some sight seeing and a mechanical.  That was easily the longest I've been in the saddle this year, and it felt great but at the end I was quite spent.  While I did that, Sarah took Lucy on a nice long hike and got her into the stream a few times.

The next day, two friends did some downhill runs, but I was pretty tired and could hardly bike at all.  So, I did a little ride into town with Sarah and back.   We got back into Denver with plenty of time to watch the day's Tour de France stage.

The weekend ended with us having dinner with a friend.   All in all a great weekend.

Radiation Oncology appointment #2....and some good news

As I posted, I had my PET scan yesterday.   Although it was only my second time, it went very routinely.  Hard to even comment on it.   I was nervous about it, for obvious reasons, but really I was nervous about the results.


Today was my second appointment in radiation oncology.  The first one was simply meeting with the radiation oncologist and talking about everything.  After that meeting, I felt like I had a decent grasp on what radiation entailed.   Maybe I wasn't as sure as I thought.


When I got there today, my doctor was not around.  I guess I hadn't anticipated that he wouldn't be there, but the appointment wasn't with him, it was a "simulation."  So, I figured they'd just "simulate" where the radiation would go.  It started out with a consent with one of my physician's partners.  He went through all the standard things, which include the possibility of future cancers from radiation, but the high risk of relapse without it.   Then he asked if I had any concerns.  Well, of course I did!   Was there anything he could do about them?   No.


I'm not sure if I've blogged about this before or not, so I will here.  I apologize for those that have heard this, which is most of you.   When they discuss "focused field" radiation and "shielding" organs, what I had imagined was basically "Batman" body armor, with the ribbed abs built in, and instead of a yellow bat symbol, a tumor shaped hole cut out.   I guess this was a ridiculous expectation, but I didn't know.  Halfway through chemotherapy, one of my nurses laughed at that and told me what it would really be.


What I didn't know was that although I wouldn't get my batman armor, I would be getting a mask.  Stolen from google images, this is what it looks like:

So, I was under the impression that my "focused field" would be right at the chest, but one of the planners suggested (in the room, although not to me) that it could go as high as my chin.  Maybe she was talking about something else, but I don't know.  She said that she wanted my chin to go "as high as he could take it."   Wow.


I suppose I should say here that the mask does NOT start out looking like that.  It starts as a flat meshy thing with a frame (as you can see in the pic).  So, imagine the mask being flat.  It looked plastic and brittle.   They said they'd put hot water on it and form it to my face.   I heard this, I thought I understood it, but it came as one of the bigger surprises in my life.   So, they are showing me the flat "pre" version of my mask, and the next thing I know, I'm laying on the table, with my head in the cradle (and chin "as high as I could take it"), and they are pushing this mask over me the way you might use a pillow to smother a person!  Sure enough, that "brittle looking" plastic gave way all over my face and then they're putting cold cloths on to "solidify" it.  


So, now I'm laying on the table in this CT machine, and I'm in this mask, and they are screwing the mask to the table, and I'm closing my eyes because there are lasers everywhere, and I have my shirt off and all these sharpie marks on my chest, and now I'm wondering.....how did I get to this point?    They started to put tape everywhere and I managed to get out that I had a tape allergy.  (Sort of.  Still).   They yank the tape off, but told me they'd start, and then I had 15 (?) minutes in the machine, eyes closed, no idea what was going on.


Eventually they came out and unhooked my head from the table.   I was very confused.  If was in a CT machine, it wasn't on, since they didn't make me remove my metal belt buckle or watch or anything.  So, then they were ready to mark me.   Instead of my batman armor, they give you these tiny dot tattoos to line up where the radiation will be.


At this point, I had no idea what my PET scan results were, and neither did any of these "planners."  OK, so, how can you "mark" me for my radiation when you have no idea where you'll be radiating?  The answer to this question was that 1) they'd largely be using the old scan, since they're going for my biggest tumor primarily, but even more so 2) they're just body landmarks, and they use them to shift the field of radiation towards the tumor, rather than actually marking the tumor.   So, that was marginally calming information.   After that I got my little tattoos, and then was sent to watch a video about radiation.


The appointment ended with a nurse who basically told me about skin care.  There wasn't really any worthwhile information from that meeting, and I was allowed to leave.   I was feeling very overwhelmed and quite honestly, I was nervous.   I went back to work to finish a few things before heading home.


On the way home, one of the (medical) oncology nurses called on behalf of my oncologist to tell me the PET scan indicated remission.    Maybe today wasn't such an upsetting day after all.

Another all purpose update - all quiet on the medical front

The crab legs were awesome.  Better than I had remembered.  I ate a lot of them, and probably could have eaten more, but couldn't help but notice I was still eating when everyone else was done and so I stopped.


I haven't written anything here in a while, because not much has happened medically.   On Friday, my port came out.  I had sort of mixed feelings about this, first because I was so thankful to get it, second because it helped out so tremendously, and third because if things don't go well, I'm afraid of needing it again.   It is out, though.   Having it put in was so much better than getting it out, because getting it put in involved conscious sedation, and getting it out only involved local anesthetics, which weren't nearly as pleasant.  I have a tegaderm dressing on it now, and that can come off tomorrow.  So far, I'd say my "skin allergy" is gone, except one corner of the dressing is really red and irritated and showering makes that area burn like crazy.   So, I don't know what that is all about.   


What else do I know?   Tuesday is my PET scan.  Wednesday I have a simulation session in radiation oncology, and the Wednesday after that a "port" (as in portrait) session.   I'm pretty sure this doesn't involve photography or sketching.  July 26 is when my radiation is tentatively scheduled to start.


So, I haven't blogged because nothing exciting has happened medically.  This was my line of thought.  However, Sarah has noted that I haven't written about fun things either.  We are definitely doing more fun things.   "One Fun Thing" has turned into "Multiple Fun Things" each week, which I am thankful for, and I'm working on cramming even more in constantly.   This can sometimes decrease time for blogging.  


I've gotten a lot of rides in these days.  That's great.  Sarah has gotten some riding in herself.  We've had some dinners with friends which have been great.  We went to the American Mountaineering Museum, which was terrific.   We took Lucy to the Farmer's Market, and she had a good time.  We took the dogs out for Doggy Ice Cream.  We've been watch the Tour de France.  Even more, we have a few weekends away planned, as well as a longer vacation this winter.   So, there are definitely things to look forward to coming up.  I'll try to do better in highlighting fun things, and of course I'll post how the next few appointments go.