Wednesday, November 17, 2010

After Cancer - Chop Wood, Carry Water (by Susan)

There is a little anecdote I remember reading in a book about Zen Buddhism.  Here is how it goes:
Q:  What do you do before enlightenment?
A:  Chop wood, carry water.
Q: What do you do after enlightenment?
A:  Chop wood, carry water.

The meaning is, of course, that when you have a great mental shift, outwardly everything stays the same - it's just the way you experience it that changes.  It also means that the mechanics of daily life still must go on even when you are "enlightened".  You still need to work, still need to eat as long as you are a physical being.  You don't get out of these activities by being an enlightened person. 

The same thing is true of surviving cancer - you go through a huge shift in your perspective but no one can see it but yourself.  It seems that the doctors patch you up just enough to put you back in the saddle - they bundle you off back to work and then wave goodbye (if you are lucky).  You think "Wow - I'm a survivor!  I made it!"  and then you just have to go back to the mundane life of earning a living and taking care of your responsibilities. When I survived my own cancer ordeal I somehow thought that I should just get some lottery money, or the government should subsidize me as reimbursement for all of the pain and hardship that I had been through.  Sadly, this was not the case - as soon as I was healthy I was back working again.   The difference in perspective comes in when you treasure that moment of  talking to a friend on the phone, driving to the supermarket, or  drinking your morning cup of coffee and looking out the window at a new day. Activities that used to be boring or taken for granted become precious when you think that you could have lost them forever.

I think George has been going through the same thing lately.  It is part of being a cancer survivor.  He is really looking great - having his hair, eyelashes, and eyebrows back makes him look like his old self.  But it takes longer to feel like your old self on the inside.  It takes time to trust your body again and believe that you have time.  

As for me, I wake up every morning gving thanks for having George in my life.  Taking walks, going on bike rides or runs together, eating out and having him enjoy the meal - these are wonderful activities.   Just lately he has gotten his spark back - laughing more and being generally feisty and ornery.   We are so looking forward to a warm holiday season filled with loving friends and family to cap off our Fabulous Fall.

On the food side, I have been sticking pretty well to the vegan diet, and I have some good news.  I finally got my blood work done and my cholesterol has dropped 45 points from where it was a year ago.  This is all without any drugs.  I have not changed my exercise habits or lost any weight (my weight has stayed the same), but my cholesterol dropped dramatically.  The drop all came in the LDLs - my HDL and triglycerides stayed the same.    My cholesterol is now in the normal range.   I am still trying lots of new recipes and have become quite used to the vegan lifestyle to the point where I don't miss animal products at all.    When I do eat them now I don't even like them any more.  Dairy feels gunky and meat has a weird texture.  However, a really fresh salad can taste heavenly.  I have had some people ask me about my calcium intake.  The answer is that you can get plenty of calcium from leafy green vegetables, grains, and beans.  I am getting a bone density scan next month so I will see if there is any difference there from last year.   

Next week is Thanksgiving.  I will be bringing some vegetable dishes (but NOT eating Tofurkey).   No matter what you eat, the important thing is to give thanks for the people you love.    So maybe I should revise the statement to be, "After Cancer - chop wood, carry water, and LOVE it!"

Thursday, November 4, 2010

all clear at two month post-chemo check-up

Just got back from  my two month post chemo checkup. The GREAT news is that everything seems to be going really well. Yeah, me! Yeah, my body! Man, it's a sunny fall day here in Colorado and I am just diggin' being alive and (relatively) healthy.

A few more details as I continue my habit of sharing all the minutiae of my illness with you, my faithful blog follower. You'll remember that I had some funkiness going on in my back - what looked like a compression fracture in my T7 vertebrae. You can see from the MRI picture below (click the image to get a larger view) that the vertebrae is slightly trapezoidal in shape (should be square) and it's a bit discolored (indicating some healing going on in the bone).

And let's talk for a second about the MRI machine to get this kind of picture of your thoracic region. If you're claustrophic, you wouldn't like it! The top of the tube is about 4 inches from your face. I kind of thought it was cool - like being inserted into a torpedo tube. But if close quarters aren't your thing, you might want to get some pre-medication to calm the nerves. And talk about loud - wow! Kind of like a crazy, techno beat that you can hear and feel through your whole body as the magnets in the MRI clank back and forth. In my case, for 45 minutes. Even with earplugs I came out of it with my ears ringing and feeling pretty spacey.

Anyway, I went to my neuro-surgeon last week to evaluate the MRI and he thought my back didn't require any treatment. My core is stable, I'm in no pain, etc. So, no situps for another 6 weeks or so and avoid any heavy lifting over my head and I should be good to go.

The other medical issue I've been dealing with is some inflammation in my left arm from some veinous blood clotting. My care team decided to start me on some blood thinners and they have definitely reduced the swelling in my arm. It doesn't hurt which is nice, but no free style swimming until the symptoms go away. It's a slow process - I've been on the blood thinners for a couple of weeks and there's been some progress but the symptoms are not completely gone yet. So irritating but not life threatening so we'll work through it ok.

Today I saw my oncologist and everything looks ok from a lymph node perspective. I've felt some weird tingles in my neck which had me pretty freaked out but the word is that this is being caused by the fact that I'm starting to get sensation back in my neck from the incision done when I had the biopsy in March. So those tingles are in fact a good sign and have nothing to do with tumor growth. Yeah!!!

On the conditioning front, I'm definitely making slow but steady progress. My weight has been pretty stable but I'm trading the jelly roll around my middle for some muscle mass in my legs. I now have a 1-pack on my stomach. Getting to a six pack may not ever happen but will definitely be slowed down by the fact that I can't do any situps for another six weeks to give my back time to heal. On my bike rides, I'm seeing definite improvements in times and how I'm doing relative to other riders. A month ago I would start with folks but basically do a solo ride at a slower pace than everyone. Now I'm almost, sort of keeping up with some of the folks. Of course, my goal is to crush them like a nut athletically but so far I'm not there. But spring 2011? Starting to look like that might be possible - heh, heh, heh. I did a fun (and hard for me) mountain bike ride last Saturday (track info here) and a hard climb up a local road (Flagstaff) on my road bike on Tuesday (here). Both good, hard rides that I probably couldn't have done last month.

On the mental health front, I'm doing pretty well. I continue to have some fears of a cancer recurrence. My oncologist says that given how I've responded to treatment that a relapse would be highly unlikely but not impossible. Last Sunday I had a day of just mild depression - moping around the house, not really feeling like doing anything and just feeling worried about my health. As the months go by and I continue to regain my health I suspect that these days will occur more and more rarely. Just another wicket to go through on the croquet course of cancer/chemo recovery!

So that's it for now. And just a gentle reminder - I know that ALL of you are getting your yearly checkups of all your hardware, yes? You all promised me that you would do this when I posted on this topic earlier this year and I haven't forgotten. So make sure you're staying on top of your health exams, get to the doctor if you're experiencing any weirdness that persists longer than a couple of weeks and let's all be around for a long time to drink beer and ride bikes!

Friday, October 22, 2010

A great wing-woman picture

One other quick post. Caitlyn got this picture in July when I was at my low point in the hospital. I just recently saw it and it really touched me. With this kind of support, how could I not get better! Because my white blood count was low I had to wear a mask when I was walking around the hospital. And the sun glasses - well, they speak for themselves, don't they?

Cancer Tough

And I'm sure glad I'm looking a bit better these days than when this picture was taken. It's funny, but when you look like shit, no one wants to say that. So you always get told you're looking good when  you're sick (at least, that was generally my experience). But when you DO actually look better, people will say "boy, you look so much better than xxx." And then you do the math and say, hmm, if I look good now, and I look ALOT better than I did then, that means that I looked ??? But you said I was looking good then. So that was a lie? But is your comment now that I'm looking good another lie? Or am I REALLY looking good now? Or just compared to then? Ah, screw it. Caring too much about how you look always gets you in trouble anyway, so let's just focus on getting faster on the bike! Yeah, that's the ticket...

Thursday, October 21, 2010

All is well, lots to talk about

Howdy, all. Wow, it's been a long time (over a month!) since I've last posted something. Not sure why I fell out of the blogging  habit but here I am, back with an update of stuff that's happened in the last month. This will be kind of stream of consciousness so apologies if things are kind of disjoint.

First big health milestone. Had another PET/CT scan in September and there are no signs of any cancer. Yeah, and double yeah! Here's a pic from the scan:
The good news is that there's no sign of rapid cell growth in my neck or chest. However, there was a nasty spot on the t7 vertebrae in my back (circled in red). That was kind of scary. Metastatic cancer? Nope, turns out that I have a compression fracture in my t7 vertebrae. Not sure how or when it happened. Sometime since July, since it wasn't there in that PET scan. The suspicion is that the prednisone reduced my bone density and I hurt it lifting something heavy. So hey, yeah, I broke a bone in my back. But not to worry, you've got lots of vertebrae. What's a small crack in one of them? I'm going to a neurologist next week to get an expert opinion but I don't think we'll do anything about it.

After the good news on the PET scan, we had a party to celebrate fall and a return to something like a normal life. Lots of people showed up and it was really a special night for me.

Here's a pic of my wing-woman slaving away in the kitchen pre-party:
And a random picture of the kitchen, always the center of any party:

One of my friends kindly consented to demonstrate that even after chemo, you can have more hair than some folks:

And speaking of hair, mine continues to come back; here's a picture of me from fairly recently, showing the new bone dome look:

After the party, a week of work (what? work? Doesn't everyone know that I'm a cancer survivor? Doesn't that entitle me to just hang out and not work? Answer - nope. Sigh).

After the party, I had a PFT (pulmonary function test) and a visit with my pulmonologist. My lungs are doing really well from a functional perspective - I'm back to having about 120% of the projected lung function for someone my size. I still cough a bit more than I think is usual and some days the lungs don't feel quite perfect. The PET scan did show some residual signs of the bleo poisoning so they're not completely better yet (or they weren't in mid-September when I had the PFT). The oncologist is pretty confident that that stuff will eventually go away. So good news on the lung front...

Then, a most awesome week on Kauai with Susan. Way too much to talk about in one post, but the quick summary: awesome, fantastic, great weather, great scenery, great company, a most delicious 7 days in paradise. Just to get a quick sense of the week. A picture of us enjoying a nice dinner at a restaurant near our condo:

and one of the dolphins showing off on our zodiac tour of the Na' Pali coast:

and a picture of the ocean from the beach in front of our condo:

After that trip, we've settled back into the work grind. We've  had some beautiful fall weather here in Colorado these last two weeks so we've both gotten in some nice bike rides.

I would say that the only significant medical problem I'm still battling is some thrombosis (blood clotting) in my left arm. It's gotten bad enough that I've had some swelling in my whole arm and have started some treatment on blood thinners  (fragmin and warfarin) to keep my arm from getting too messed up while my body works on removing the clots. It's not painful but it's kind of a pain in the ass. I'll probably have to go into the doctor every week for the next three months to get my clotting factor checked to make sure it's not too high or too low. Luckily the cancer center is only about 5 minutes from work so I should be able to do this without any significant impact on my daily schedule. But I sure was looking forward to getting all the medical stuff in my rear view mirror and not having that be such a significant part of my daily routine. Oh, well. You do what you have to and just keep moving forward, I guess!

On the fitness front, the trip to Hawaii seemed to really help. I came back feeling refreshed and started putting out significantly better numbers in my running and biking workouts. I've still got a ways to go in terms of fitness but I can definitely see progress which is super encouraging.

On the mental  health front, I think we're both doing well and again, the Hawaii trip was very therapeutic. I do have some moments where I worry about the future - will the cancer come back, how will it be to go through another round of chemo, will my body ever be like it was before. So those dark thoughts are definitely around. But in general I'd say that life is looking pretty good. I've got love in my life, great family and friends, my health continues to improve, I get to ride my bike and I get to write a bit of software now and again. Not too shabby a lifestyle!

Well, that's the quick update. I suspect the frequency of posts going forward will continue to be pretty spotty since our lives are starting to be pretty mundane - which is a good thing!

Thx again to all of you for your support on this journey. It's been a huge boost to my physical and mental health to have so much support. You guys rock!

Thursday, September 16, 2010

A great ending to a tough day - thx for the Organic Dish meals!

One other note about our tough day last Thursday when I was diagnosed with the blood clots. So imagine this scenario - your 15 minute appt turns into an all day affair involving a trip to the hospital, your wife has got a mountain of work thrown on her because her boss decided to resign, you've got a code deliverable in the morning, you get home at 6:00 pm totally wiped from the day and now someone has to make dinner. Yuck...

But you've got a super secret weapon up your sleeve! Your awesome peeps at work have gotten together and donated some beer tokens (aka money) to set you up with free organic, vegan meals courtesy of The Organic Dish! So, I cracked open a Newcastle (thankfully my interest in beer is returning) and within a few minutes we had a great meal involving mango salsa, couscous and a tasty veggie ragout including beans, kale and zucchini. Man, what a nice way to perk up what was pretty much a train wreck of a day. Here's a picture from table-side:

As you can see we had a good  variety of alcohol to go along with the entree!

So thanks again to the folks at Flatirons that contributed to this very thoughtful and useful gift. Through their generosity we've been given a bunch of free meals that we'll use over the next few weeks whenever we hit a down or especially busy day. Good stuff!

Thrombosis? What Thrombosis? Who you callin' thrombotic? And other good news

Just finished a good checkup with my oncologist. As you the intrepid blog-reader will remember, last week I was diagnosed with blood clots in both my arms and was sent home from school with a week long assignment to inject myself with heparin everyday, stay out of the pool and get my veins less gunked up with blood clotty type stuff.

And since I haven't posted any slightly inappropriate body pictures in a while, here's a fun one of my stomach (please keep all comments about the lack of a six pack to yourself. I know it's a jelly roll but I'm blaming that on the prednisone!). Anyway... The heparin is an anti-coagulant and frequently you get bruising at the injection site. So, you get to:
  • inject yourself every day. Not too gross but that moment when you have the needle touching your skin and have to push it in is a bit sketchy.
  • the needle is very thin and doesn't hurt going in. But ah - the heparin. That, my friends, is a different matter. That stuff gives you a 2-3 minute sting like a mild bee sting. Not horrible but not in the "Gee, this is fun, I wish I could more of this" category.
  • And, you end up getting some nice purple bruises on your stomach. Self inflicted, BTW. And not completely clear that any of this is necessary. Yeah, that was fun!
  • The bruising in the upper left quadrant and lower middle-right section of the pic are courtesy of the heparin. More fun with the Geo science experiment!

Today I had my exam and passed with flying colors. My veins are much improved so no more heparin injections. I read the radiologists report of the ultra sound study and to my ears, it didn't sound like explicit clots as much as some general stiffness in a few areas of veins in both arms. And in the vein world, stiff is not good. Anyway, that seems to be much better so hopefully that's all behind me. They also did a bunch of tests for other diseases (like Lupus) that might start manifesting themselves with inopportune clotting. All those tests were negative which is a relief. Let's stay focused on one major disease per year, shall we?

Other news - my case was presented at the tumor board last week. I am officially classified as NED (No Evidence of Disease) and also as CR (Complete Response) to the chemo protocol I was given. These are both really, really good things to be in the cancer world. So now we'll do a PET/CT scan next week to confirm that everything is ok in my chest and then we're in wait and see mode to see how things go over the next few months.

Other news this week - I've been off the prednisone for a week and my lungs feel ok. They're certainly not perfect but my pulmonary function is still getting a little better every few days. I'm also starting to lose some of the fatty deposits the prednisone left me so I'm starting to see my midsection emerge from the roll of fat I had grown over the last 2 months. It's kind of funny - I think I'm adding muscle at about the same rate as I'm losing fat so my weight has been pretty constant. Although I guess that's a standard phrase that people use when they see fat going away from one part of their body but they're not losing any weight! So maybe I've now officially joined the ranks of people that have Good Excuses For Why I Don't Weigh Less. Of course, the best part of that club is that it's also part of the I'm Going to Live Long Enough To Worry About My Weight club, which is one I REALLY like being in (or at least I'm working hard on the membership application).

Let's see, what other news. Went to the LiveStrong wine tasting on Saturday and met up with Bob, Nancy, Josh and Sarah. It was pretty mellow but fun. We spent a bit more money buying some stuff they had for auction and felt good about contributing to a good cause.

On Tuesday, I was at School of Mines doing some recruiting and had to talk pretty non-stop for about 4-5 hours. That was a pretty good stress test of how my voice is doing. My voice was definitely hoarse at the end of the day but I made it through without any major coughing fits, wheezing, etc. So that was a good milestone. And BTW, my o2 sat this afternoon was 100, which is a good indication that I'm a happy, oxygenated guy.

Other odds and ends - legs are feeling a bit less gumby like. I did some striding intervals today at lunch and could go 50-60 yards before I started to run out of leg juice. A month ago that number was about 5-10 yards so definitely good progress there. My hair continues to grow back. I'm now starting to get some more gray hair on the top of my head although in general my noggin still looks pretty black. Still don't have my normal compliment of eyebrow or armpit hair but I'm assuming those will come back at some point. My facial hair is pretty much back to previous fullness although still maybe growing slower than pre-chemo.

Anyway, a good checkup this afternoon. Next week I'll get a pulmonary function test and another CT/PET scan and the week after that I'll review with the docs. The following week we're off to Hawaii for a week of R&R which we're both really looking forward to!


Thursday, September 9, 2010

How to turn a 15 minute check up into a 5 hour trip to the hospital

Well, today was another "interesting" day. I went in to the cancer center for my weekly spot check to make sure my lungs are doing ok with the reduction in prednisone. Everything was good and then I HAD to open my big mouth and mention that my arm was still pretty sore when swimming. So, the nurse practitioner suggested I get an ultra sound of my arm just to rule out a blood clot.

So, over to Foothills hospital (just across the parking lot) to get both arms looked at. This turned out to be a pretty long process because they had a new machine and used me as the guinea pig for some training. The overall process took about 2 hours and everything was pretty chatty until the end when I asked the big question:

"So, how does everything look?" And when they get real quiet, you know it's time to start getting worried. "You know the drill, you have to talk to your doctor." Uh-oh, I think. Not good. So then they leave the room to show the pictures (95 of them!) to the radiologist. And then they come back and say "You need to go back and talk to your doctor." And if you have ANY imagination you are now thinking "I am FUCKED." They've just spent two hours looking at EXACTLY the spot where I had my tumors and now they're telling me I have to go back to my doctor. SHIT. Well, it was a pretty surreal trip across the parking lot. I'm thinking, "what kind of bad ass, end-of-existence cancer do I  have that it comes back after only 2 weeks of not getting chemo? And what's next?"

So I get back to the cancer center, get in the exam room with the NP and the first words out of her mouth are "we need to wait for the doctor to come in." Which is not translated as "we have such great news we just have to have the doctor give it to you". Rather, it's translated as "some bad shit is about to come your way and I'm not cleared to deliver that shit to your doorstep."

So the doctor comes in and tells me I have blood clots in each of my arms. And I'm SO RELIEVED that it's only blood clots that I'm about ready to throw some combination of man-hug/ head butt on him. You got me this dialed up for blood clots? Which I know can be serious but are way less threatening than what I had imagined.

Some people don't treat blood clots in your upper body as they tend to resolve themselves and tend not to break free and travel to nasty places like your heart or brain. But  my doctor has decided to treat these bad boys so I'm going to get 7 doses of heparin. These are delivered in a shot which I give myself. I quickly decided that I would put my predisone tummy tire to work and have it be the recipient of the heparin love. I gave myself my first shot this afternoon and it was pretty easy. A bit of burning going in but not terrible. Hopefully 7 doses and the clots go away and we write off another speed bump on the journey!

So that's the way you turn a 15 minute visit into an all-day ordeal, including a hospital visit, 2 doctor's office visit, self injection and a pharmacy visit.

But, lest you think that this has rocked my world, I did get a bike ride in today to boot! myGarmin post is here. Not a long ride but a good stress reliever after a day that didn't quite go the way I expected.

Monday, September 6, 2010

And today we will NOT be going to chemo!

Today is a day that we've both been looking forward to for the last 168 days. This is day 29 of cycle 6 of my chemo. But since we all know that there are only 28 days in a chemo cycle, this means that -  hells yes! - this is NOT a chemo Monday. This is the first every-other Monday in 24 weeks in which I didn't head in to get deadly chemicals pumped into my body. To celebrate, we climbed on the pain train (thx Josh for another great phrase!) and did a hard early morning run. Running still seems to be the hardest sport for me to do of the things I used to do pre-chemo. My legs feel a bit stronger this week and I did my 2nd best time on my running loop but boy, it was hard - sustained heart rate > 170 and I ended up doing some fartlek (stride-outs and walking recovery) for the 2nd part of the run. For those of you interested in the details, myGarmin post of that workout is here.

After that we had a casual breakfast and then celebrated our first non-chemo Monday with some activities I can't describe in a G rated blog. And boy was that a great counter point to all the other Mondays of getting chemo!!! Yes, life is looking pretty sweet today as I look forward to getting stronger and enjoying our Fabulous Fall. Last night we had a nice party with friends and tonight we're heading over to dinner with family. Tomorrow I'm back to work full time. Getting through the entire day without a nap will be a bit of a challenge but I'm looking forward to getting out of the house and getting another part of my life back to normal.

On the medical diagnostic front, I've got three events coming up:
  • This week is my last week on the prednisone. Next Monday I will stop taking it and hopefully my lungs will continue to feel ok. And with the prednisone out of my system I should start to put back on some muscle mass and will work on getting rid of the nice little tummy tire that the prednisone has given me.
  • In mid September I'll get a Pulmonary Function Test and we'll get a quantitative sense of how my lung function is doing. 
  • In late September I'll get another CT/PET scan. This will give us some insights into whether I have permanent damage from the bleo and also confirm that I have no abnormal cellular growth.
So for this week, back at work and living healthy is the order of the day. I'm going to modify my workouts to be a bit more tri-oriented and less focus on the bike. I'd like to get some swim and running workouts in next week since they both really work on recovering parts of my body (phlebitis in my left arm, gumby legs) that need work.

Enjoy the week and look for a blog update next weekend!

Thursday, September 2, 2010

On the downhill side of the mountain! (by Susan)

I was telling George that going through the cancer and chemo this year was like climbing a big mountain on your bike - hard, sometimes boring, sometimes feeling like you're not going to make it going up - then, just when you think your're going to collapse (or maybe you have already collapsed several times), you hit the top - pause for a moment to take in the view, and then start the long, fun descent that you've earned.    We've been sitting at the rest stop for the past week, just enjoying the scenery, catching our breath, and now we're about to hop on our bikes and start down. 

George is definitely getting better each day - getting his strength back, breathing better, voice more normal, and getting more hair!  He has actually been getting bored at home, which is a good sign because it means he's getting back to his old self.  I am also starting to feel as if I'm awakening from a long nightmare.   We are planning all kinds of fun stuff this fall - we're calling it "Fabulous Fall".  One thing these experiences make you realize is that you should just take your fun and good times whenever you can get them!  So, in the spirit of Fabulous Fall, I am declaring some things I am going to stop doing:
- Feeling guilty
- Doing things out of obligation
- Working too much (some people I work with might dispute that I have EVER worked too much, but I feel as if I have!)
- Justifying myself

And that's not even the whole list - I'm just getting started!

People have been so great to us throughout this whole thing - I am awed by the level of caring that our family and friends have expressed.    This is something you just can't buy (hmmm - wasn't that a Beatles song?)

A few people have asked how the veganism is going, so here's an update.  I have found, to my surprise, that after weaning myself from meat, I no longer miss it at all.  I have cut out all eggs and dairy, except for occasional cheese (because, as I've posted elsewhere, it is addicitive with opiates in it - no joke!)  The other thing I've fallen off the wagon for is sushi on several occasions.  So, I guess you can call me a Vegan with Occassional Cheese and Sushi.   George has never totally given up meat - he still has turkey and chicken for lunch, but he has given up most dairy and eggs and red meat, so he is eating much smaller amounts of animal products than he used to.

I am feeling really GREAT on the vegan diet!  Now that George is off chemo, my energy is coming back too.  It is weird that I used to collapse on the couch every Monday night after George's chemo sessions.  I think I was more stressed out about it than I knew consciously.    I have not lost any weight on the vegan diet (darn!) but I have not gained any either - I am pretty much at a stable weight eating basically as much as I want to.    I have not had my blood chemistry checked yet, but I will let everyone know the next time I get my cholesterol checked. 

Here are some of the vegan benefits I've noticed:
- Digestive system feels really good
- Joint pain has gone away
- Yoga feels really good (maybe due to absence of joint pain?)
- Energy level has been good
- You can eat batter and cookie dough without worrying about salmonella
- Don't need to worry about germs and rotting meat in your kitchen
- Improved sense of smell
- Don't need to worry about gross uncleanliness and e.coli contamination from Big Food enterprises (because we also eat organic)
- I feel like I am karmically one with the universe because I'm not eating animals!

If anyone is interested in going vegan, I highly recomend the 21-Day Vegan kickstart.  It has menus, shopping lists, recipes, and moral support for people trying to change their eating habits.  There is a new one about to start next week.  Here is the link:

I am hoping that this new eating lifestyle will help create a healthy future for George and me. 

We are both looking forward to having a fun, relaxing Labor Day weekend, then George is back to work next week.

We thank all of the people who contributed to help us get vegan, organic meals delivered to our home during these next few weeks - what a wonderful gift and so perfect!  You have obviously been reading the blog!

Monday, August 30, 2010

Monday check-up; all systems in the green

Just a quick post today to let you know that I went to the cancer center for a quick check-up today. My blood work is rebounding from the last chemo session nicely and everything looks good. Temp, bp, O2 sat, weight all good. I'm moving down to 20 mg/day of prednisone this week. My lungs are clear and my pulmonary function continues to feel more normal.

We talked a bit about the problem I had with my left arm swimming. This may be from the phlebitis in my vein or there may be some damage in the vein from the port. In either case, range of motion exercises (like swimming) will help. The nurse practitioner also suggested I look into acupuncture to help stimulate blood flow and circulation in my left arm and shoulder. I'm not sure I'll pursue this - I'm sure it would help but at this point I'm trying to reduce the amount of energy it takes just to keep my body functioning at a reasonable level. Adding another care giver to the mix is kind of going in the wrong direction. But we'll see - if the swimming alone doesn't help resolve this I may look into acupuncture.

The next big milestone is a CT/PET scan in early October. At that time, I should be off the prednisone and fairly well recovered from the chemo. With those stabilizing factors in place, the scan should show a nice, quiet lymphatic system with no abnormal growth going on.

Oh, yeah, one more plug - we've having a big party on September 25th to celebrate what we think will be a Fabulous Fall for us. So if you're in the Boulder area that weekend, please stop by! The evite link describing the party is here.

Ok, that's it for now. Have a good week!

Sunday, August 29, 2010

Anyone interested in drinking wine and fighting cancer?

A friend of mine let me know about this event and it sounded like fun so I thought I would share. Susan and I are going and hope to see you at the   Taste of Victory II which is being organized by Livestrong Colorado. It's coming up on September 11th. 

 $25 per head (pre-paid, $35 at the door) gets you inside and will get you 4 tastes (or one bottle of wine), and you'll be supporting the mission of Livestrong. Of course, it's a silent auction so you can drink a lot and then spend a lot more money for a good cause!

The event will take place at the Bonacquisti Winery.  You can purchase tickets by clicking the link at the bottom of this page.

Hope to see you there. I will be the guy with a boatload of new black hair :)


ps. Thx Josh for the initial posting on your blog that I shamelessly stole from!

Saturday, August 28, 2010

Bed Hair!

Many people bemoan bed hair - you know, you get up in the morning, look in the mirror and your hair is all nutsy. This is usually solved with a shower although a baseball cap is a favorite weekend solution to this critical issue in early morning body management. Many folks wish that there hair would be behave and not get all crazy when they sleep on it all night.


When you haven't had much hair for several months, and growing hair is a sign of improving health, bed hair is suddenly a mark of glory, of excellence, of - well - of having hair.

And yes, this morning, for the first time in 6 months, I have bed hair! Well, just a tiny bit of some hair wings on one side of my noggin, like so:

Oh, yes. See those little, tiny tuffs sticking out from above my ear. That's bed hair, baby! Yeah!

Well, just wanted to share. Probably going to need to get a big haircut today to keep this rangy mop under control :)

Friday, August 27, 2010

A Good Week!

As Susan and I sit in our study and catch up after the week I'm happy to report that this has been a really great week. After the tough Monday with Roy's passing, we managed to turn to look at all the positive things that are going on and have embraced the good stuff that's come our way this week.

Here are some of the highlights of the week:
  • Showering! Yes, you all probably take this for granted but after getting the PICC line out, showering has emerged as a really nice, simple pleasure in life. Being able to just jump under the warm water, soap up and not be worried about getting Pablo wet has really been great.
  • I played soccer Wed. night! My men's team was desperate for warm bodies so I threw on a jersey and did my best imitation of a turn style - turning around, watching the play go by me. I was just horrible. The prednisone has atrophied my legs quite a bit (especially my hamstrings and calves ) so I literally can't sprint more than about 10 yards without feeling like I'm going to fall over. But despite how unbelievably unfit I am, it was just, pure, unadulterated joy to be back on the pitch. All the guys were really supportive and it was just a wonderful moment in my recovery. I suspect that in a month or so I might be able to actually play a little bit. 
  • More good bike rides. With the removal of the max heart rate restriction I've been able to put the hammer down some more on the bike which has been great. Painful, hard, frustrating, trying, but great. I managed to get up Antelope at Hall Ranch and up and around the lollypop. I went on a weekday morning and it was just a beautiful morning to be out on the trail. 
  • Swimming! Got in the pool today for the first time in about 22 weeks. Felt awesome! I have a bit of phlebitis in a vein in my left arm from all the blood work that's been done in that arm so that caused me some issues while doing freestyle. But I think the swimming will really help the veinous blood flow in my arm and that will help the phlebitis get resolved. 
  • More home improvement! Did a fun project to upgrade our master shower a bit. Now this might look like a Decepticon from the Transformers movie:

    But it's really the valve assembly for the shower (note the awesome solder joints :) . And here is the sheetrock work to put the wall back together after the Decepticon was installed:

    And here is the finished product:

    Yeah, I admit it's pretty boring but when you leave an engineer at home for a few weeks these types of projects come out of the woodwork. And the previous fixture was pretty ratty so definitely an upgrade.
  • My voice is back! The singing, exercise and general healing of the last few weeks has really helped my voice. This was really one of the issues I wanted to get resolved before I went back to work. It's hard to be a consultant when you can't talk without coughing or your voice is so weak people are afraid you're going to pass out just from trying to say something. So this is a big milestone. 
  • Along with the all the specific things, in general my energy level is higher and I'm starting to believe that I'm getting better. Knowing that at least for the next few months (and hopefully for years and years to come!) I'm just getting healthier and healthier is really an emotional boost.

    So a really, really good week. Usually my low day in the chemo cycle is yesterday so I'm really excited that I feel pretty good today, which is hopefully an indicator of more good recovery to come in the next few weeks.

    Enjoy your weekend and know that I will be getting better and enjoying life!

    Monday, August 23, 2010

    Roy is gone...

    Today at the cancer center we learned that one of our cancer peeps passed away last week. I blogged about Roy in this post in May. The last time I saw him was about 6 weeks ago and it seemed like he was getting better. He had colo-rectal cancer and had lost a ton of weight. But it looked like he was putting a bit back on and his mood was good. He was an interesting guy - had worked as a software developer at NCAR, rock climber, your typical smart, outdoorsy, Boulder guy in his mid 60s. I don't know the details of the end of his illness but obviously he took a turn for the worse and didn't make it...

    The news was pretty devastating to me. You know intellectually that some of the people you see there aren't going to live long. And I'd previously had some interactions with Rose who looks to be on the losing end of a fight with stage 4 metastatic breast cancer. But to get to know someone and then have them just not be there - it's pretty much an emotional sucker punch to the stomach. So shit. This whole disease thing is just a rock-your-world, i-hate-it-that-this-exists-in-the-world thing. And it reminded me of the Dave Matthews song "Funny The Way It Is." Here Susan and I (and our whole family and set of friends) are celebrating the end of my chemo and the road back to health while at the same time Roy's dead and his family is trying to figure out how to move forward in their lives. WTF doesn't begin to express my feelings about this.

    I don't know Roy's last name but I will miss him. I will think about him when I'm up in the mountains west of Boulder where he lived or when I taunt some junior developer because they don't know what great fun cron, awk, sed and perl can be (Unix utilities, if you don't know, don't ask..)

    So it's been a pretty intense day. On the one hand - done chemo, all green lights for improving health. And oh yeah, Roy is dead - gone, no more chats about doing development on Sun-2 workstations, hiking and biking in the mountains, the joys of servicing your PICC line. And, with those two sets of feedback, you're free to go back into the world and do what you do. Whoa...

    As I've said before, in the land of chemo and cancer, boring is usually better than exciting. Today was a bit of an exception to that rule - exciting, really good and really bad, all mixed together.


    Today I finished my 12th and last infusion of A (sometimes B) VD chemotherapy. Everything went very smoothly and was uneventful - just the way we like it! I did ride my bike to chemo - the myGarmin post of that ride is here if you're interested.

    And, in keeping with my "stick it to the cancer man" attitude of late,  here is a picture of me getting my last infusion:

    At the end of the infusion, the nurse took out my PICC line. Pablo did a great, great job - but I dumped him into the trash like the lame-ass, picc-bitch that he is! (Sorry, still feeling a bit of attitude about the whole morning). It was great to watch - they pull this small diameter (3-4 mm?), 12-15 inch line out of your arm - and it just keeps sliding out and you think - crazy! That thing was in the top part of my heart. No pain coming out and they just put a little pressure bandage on the wound. So for the first time in 24+ weeks I have no weird hardware in me. Bitchin!!!

    Had a couple of good moments with the oncologist as well:
    • I had given him a paper printout of my Edge 705 recorded workouts. Turns out he has a Garmin GPS trainer but only one of the 400 series. I enjoyed taunting him with my superior, 705 Edge technology. Definitely won that man-gear competition hands down!
    • The doc gave me the green light for max physical exertion exercise. He felt that I couldn't do anything in a workout that would damage my pulmonary or cardiac function. So as my strength comes back I will add more intensity to my workouts. Yeah! (I know that some people wouldn't see this as a positive development so to each his own, I guess).
    • After I manned him up about his dumb-ass Garmin GPS, he came back at me hard and noted that I had gained some weight (due to the prednisone) and that I had some dents in my quads (again from the prednisone taking away muscle mass). So he told me to lose the weight and ride my bike more to get my quads back. Talk about tough man-love! He was definitely pushing all my buttons and it was fun to get some taunting. I believe that when your care giver taunts you it's a sign that things are going pretty well in your treatment...
    • We talked about how to heal yourself after chemo. Can you do anything to cleanse your body of the chemo, etc? Apparently the chemo doesn't stay in your body that long. By about day 5 of the cycle, over 95% of the drugs are out of your body. The recovery time is usually related to healing toxic effects of the chemo - nerve damage, depressed blood cell counts, etc. So his feedback was very reasonable but kind of boring. The way to get healthy after chemo is to - yup - live a healthy life. Eat good foods, exercise, get lots of sleep, stay hydrated. Just the standard stuff your mom might tell you to do. 
    So this is basically all fantastic news and just what we wanted to hear. I am in Complete Remission (CR for short). I've got another few days of feeling mildly crappy from the last dose of chemo. But from this day forward I should be getting better and better. That's a pretty fantastic bit of news to get at this point in the journey.

    So what am I feeling? Happy, relieved, impatient, thankful, scared, anxious. Pretty much doing the "spin the compass" set of emotions. I suspect it will take a couple of days to process the milestone and get my head around it. It's been a journey for sure and the last month has been particularly intense with the lung problems I've had and the hospital stay.

    So that's it for now! This afternoon is the first afternoon of my journey to wellness post chemo. That feels pretty awesome. Knowing that I will just start feeling better and better over the next month is a great thing to look forward to.

    Sunday, August 22, 2010

    Countdown to ONE day - can we sleep tonight? (by Susan)

    I can't believe it - we have been counting down the days from 168 days/24 weeks/12 chemo sessions/ 6 "cycles" - during George's cancer treatements.  We are now down to 1 day left.  George gets his last infusion tomorrow and we are both pretty excited about it. We are wondering whether either of us will be able to sleep tonight.   Only one more night of flushing the PICC line - only one more shower with the Dry Pro on George's arm to protect the PICC line - only one more day of George sitting in the big chair in the Infusion Room at the Rocky Mountain Cancer Center while I run around booking appointments, getting us drinks and magazines, and getting coffee cake from the Panera bread supply that they always have on Mondays. 

    Treating George's cancer has been the major focus of our lives for the past six months.  We have had to put vacations on hold (goodbye condo at Crested Butte with all our kids in one place for once), take it one day at a time, and try to deal with one new health crisis after another.  I, for one, have been physically and emotionally exhausted at various points, and I'm sure that's nothing compared to what George has felt.    We have both been afraid to project out what our lives are going to look like in the future.

    Last week we took a big step and booked a condo and made airline reservations for a vacation in Kauai, Hawaii, for October.  We wanted something to look forward to, a trip where we could do whatever the hell we wanted to do and totally relax by the ocean.  We feel like this is going to help the process of de-toxing from all the drugs that George has had in the last six months and also to help heal our psyches.  I felt like it was a major statement - to get back on the horse and plan something FUN!  However, we did get trip insurance, just in case!

    Today George and I met Josh, George's  blog buddy in the war against Hogdkins.  George found Josh's blog on-lineat the very beginning of this journey.  Josh lives in our area and was also diagnosed with Stage III Hodgkins, about 8 or 9 weeks ahead of George.  Josh likes to mountain bike, which was another thing they had in common.   They have been trading e-mails and supporting each other through this whole thing.  I think it helped George to take a look at what Josh was going through and see what things would be like in 8 weeks.   Today we finally got to meet Josh and Sarah, his wife.  We went for a road bike ride together and then had lunch.  We didn't stop talking the whole time - just trading our war stories, both patient and caregiver.  It really helps to talk to another person who is going through what you are going through, because the doctors and nurses, even though they are great and well-intentioned, don't REALLY know what it feels like.  

    Josh and Sarah have started to become involved with the Lance Armstrong's Livestrong organization, and George and I are hoping to do the same.   One thing I really like about the Livestrong message is the hope it gives to cancer patients that you move on to find the "new normal" and have continuing healthy lives.

    George's hair has already started growing back - the nurse told us that this sometimes happens before people are done with chemo.  His skin tone is looking better and his lungs are getting much better every day. 

    We will see what our "new normal" turns out to be.  I, for one, am ready to have a fall filled with fun, laughter, music, and, most of all, love - between George and me and also with all of our family and friends who have supported us through this tough year.

    Monday, August 9, 2010

    Cycle 6, Day 1 - Infusion #11

    Monday morning and we're back at the cancer center for another infusion. We got a nice early start this morning - was in getting blood work by 7:50 so should be completely done by 11 or 11:30.

    And the ubiquitous picture of me signaling infusion #11. You can see that I'm doing my bit to market Big Al's bike shop from CB. I'm also definitely getting back some noggin hair. Good to see the black dome start to come back!

    Good news is that there are no surprises. My blood work is good (the prednisone has boosted by WBCs and ANC #s), bp good, O2 sat good, no temp, heart rate ok, etc. So cleared for another infusion. Today and 2 weeks from today and them I'm done with chemo - hooray!!! Hopefully another uneventful 14 days, one more dose of the magic sauce and I can then really start to focus on recovery.

    Today for the first time we started talking about post-chemo recovery. The cancer center has some pointers to folks that can help with nutrition, physiology, exercise, etc. The folks here are telling us it will be a good six months before I've really got all this stuff out of my system and I can determine what the new me is like in terms of what my body can do.

    Today we also checked my lung function (clear chest sounds, good O2 sat) so we're reducing my prednisone dose to 50 mg/day. The plan is to reduce my dose by 10 mg/week. This will give my lungs a chance to recover slowly and slowly wean me from the prednisone.

    The one small negative step I've taken over the last few days is that my voice has gotten pretty froggy. I wake up in the morning and can't really talk - nothing comes out and my larynx feels like it's coated in gunk. To combat this, I've started doing some singing exercises in the morning. I do scales on the guitar and sing along. Luckily I do this in the basement or garage so no other human or feline is exposed to this torture :) I do find that the singing helps my lung function - it's hard to begin with but over 15-20 minutes my lung volume comes up and my larynx gets clearer. Hot tea and honey also helps. The nurse practitioner I saw today indicated that the chemo may be causing a bit of neuropathy in my larynx but this should resolve itself after the chemo is completed.

    So, my current daily schedule looks something like this:

    - I usually sleep pretty well from 10 pm to 4 am or so. Some nights I can get back to sleep and get another couple of hours from 4-6. Other nights I end up thrashing around a bit. I feel like I'm getting enough sleep but it would be nice to not have that early morning insomnia to deal with.
    - Singing exercises for 20-30 minutes. Scales with the guitar and solo. Toning, work on getting big, clear notes out, focus on lung volume and larynx function.
    - Breakfast, prep for morning workout
    - Morning workout, primarily road or mountain bike rides. I did one run and it was crazy hard - had to mix run and walk to keep my heart rate under 150. I'll do more runs here in the next couple of weeks but I do enjoy the bike rides more.
    - Post work nap, shower, then lunch
    - Afternoon home improvement projects, or programming projects
    - Dinner with Susan, post dinner reading, TV, hanging out.

    So that's it from the infusion center. Just finished the Adriamycin and now getting some Vinblastine.

    Oh, yeah. One more positive note. Yesterday I went up into the mountains for the first time since my time in the hospital. I've been wondering if my lung function is good enough to be able to do any sort of exercise at altitude. Yesterday we did a moderate hike at 10-11,000 feet and I did OK. Here's a picture of the unbelievably cool Middle Boulder Creek. Man, we're so lucky to have this type of outdoors so close to us here on the Front Range! And I was super happy that I can still push my weak ass up the trail enough to see this kind of scenery.

    Definitely was working hard and couldn't keep up with Susan going uphill but I did the hike without any significant lung pain. Here's a little screen snap of my workout history from the hike. myGarmin info for that hike is here.

    Tuesday, August 3, 2010

    Quick update, and pointer to myGarmin training page

    I've continued this week to do some nice rehab rides, both road and mountain bike. Every day I seem to get a little more pulmonary function back which is really encouraging. Rather than continually post individual items here, I thought it would be more efficient to just point you at the myGarmin web site where I'll post results. My workout page on myGarmin is here.

    Back when I was still thinking about doing the Copper Triangle and after I'd had the cardiac stress test, my GP and I agreed that I should  target an upper heart rate of 150 for that long a ride. I've been using that as an upper bound for these rehab rides and backing off as my heart rate approaches 150. It's definitely been a good limiting consideration - I still feel like I have some pulmonary, strength and cardiac capacity left as I bump up against the 150 limit. I think I'll keep at 150 for this week as a throttle on the intensity of the workouts. I am going to talk to the oncolology team about this. I'm wondering when and if I should up that limit to gradually introduce some more stress into the workouts in the hope that it will stimulate more pulmonary function.

    Another thought I've had is that I'd really like to get an exercise physiologist on the team. The oncology and pulmonary folks are great specialists but neither of them are all that expert at evaluating how bodies respond during exercise. It seems like our team could use some more expertise in that specialty. I'm not sure how do that within the confines of what insurance will pay for and I'm  not so fired up for this type of advice that I'd pay out of pocket dollars to get it. But something I'm thinking about...

    Saturday, July 31, 2010

    The Worlds' Best Bike Toy - the Garmin Edge 705

    For the last couple of years I've been riding with some guys that have the Garmin Edge 705 GPS/bike computer. But calling this thing a GPS is like saying that a Ferrari is a car. The Edge 705 is an uber bike geek toy. I bought the package that has a heart monitor (hey, I'm under medical orders to use one!), maps for both US cities and the topo maps of the Mountain West, trip computer, barometric altimeter, cadance sensor, speed sensor, trip history, integrates with desktop and web software for posting results, etc, etc. etc.

    If you don't ride a bike much this is probably way uninteresting and if you followed the link, you realized that I've just paid more for a basically completely superfluous component than many people pay for a complete bicycle. I do admit that this is a completely selfish move on my part but there you have it - why focus on short term disability for 6 weeks and then not bring the right tools to the job? So that's what I did - got a great tool to help me heal my lungs and hopefully the rest of me as well.

    Today Susan and I took the 705 out for a spin with the Tour of Louisville. A couple of laps around Louisville, including a climb up McCaslin. Not much of a challenge for anyone in reasonable bike shape (1 mile of a 5% grade) but for my lungs this is a big deal! You can see the details of the ride data here. As you can if you expand all the charts, I did honor the 150 bpm max. And you'll also see the blazing average speed of 11.9 mph for about 14 miles. In a good year, I would probably average 18.5 mph for this loop and earlier this year during my chemo I would probably average around 16.5. So averaging ~12 suggests I'm down about another 40% from where I was before the bleo poisoning did it's little number on my pulmonary tissue. Sort of a scary decline but on the bright side, I did this ride two days ago and averaged about 11.2 mph. So I do see improvement and if I keep up at this rate of increase (which won't happen forever, of course), in about a month I'll be able to kick Andy or Alberto's ass!

    Another quick look at the kind of information you can get from the device using some Garmin desktop software that analyzes data from the device:

    Again, this is probably hard to interpret (click on the image to see an expanded view with the right margin showing speed and bpm)  but it shows that I'm going slowly, not climbing much elevation and when I do go uphill, I quickly have to work really  hard (as indicated by my heart rate going up).

    So no surprises but the great thing for my  training is that I'll now be able to get quantitative feedback on how I'm doing and gauge how hard I should be pushing.

    Well, enough bike geeking for one night! Hopefully over the next few weeks I'll post some ever improving rides that will document my return to something approaching health. Wish me luck!

    the week in review - short term disability and lung recovery

    A big work for me this week. Susan and I decided last weekend that I should take some short term disability to be able to really focus on getting through the last month of chemo and recovering from the lung damage the bleo seems to have given me. I was a bit ambivalent about taking this step, because it sort of felt like doing this would be admitting that I had in some sense "failed" the chemo test. But we talked through it and I came to the conclusion that my #1 job right now is to get my lungs healthy and get through the last two infusions without further medical complications.

    Once we made the decision, it felt really good. I chatted with the folks at work and we got the paperwork in place for me to take 6 weeks of short term disability. I'm planning to go into the office every Friday morning for a 1/2 day to stay somewhat abreast of what's going on and to avoid going completely stir crazy (as great a cat as Socrates is, conversation isn't one of his strengths).

    Having completed one week of ST-dis (note my avoidance of the ST* acronym with it's other meaning..) I can report that it was a really great decision. I've been focusing every day on getting my lungs to work a bit better, eat well, nap when I have to and just putter around the house. I've also had a few medical appointments and paperwork to get through and it's been really great to focus on that without feeling guilty about not doing work-work.

    In the early part of the week I wasn't seeing a whole lot of improvement in my health but over the last few days I've definitely seem some big steps. I was having some trouble sleeping because of my lung issues but things have cleared up enough that I'm now getting pretty good sleep. I was also having some pain trying to breath in deeply and that's changed into more tightness than pain, which is definitely progress. I am also getting a bit stronger every day - able to do more walking and bike riding.

    On Thursday I had a good visit with the pulmonologist. He's predicting I'll have a good recovery from this damage but that it could take 6 months to completely evaluate where I'll end up after completing the chemo and getting off the predisone. So I've still got a journey in front of me but hopefully I'll end up in a good place. On both Monday and Thursday I had an 02 Sat % of 96 which is very good for living in Colorado. Basically this means that at rest, my lung function is good enough to keep me fully oxygenated. That's a big milestone for anyone coming back from pneumonia as the alternative suggests long  term problems.

    The pulmonologist also said that moderate exercise is really a great way to help recovery - I have to retrain my lungs to process as much O2 as possible, both in terms of lung volume and gas diffusion efficiency (getting O2  across from the air in my lungs into my bloodstream). Like any other physical training exercise, this is done my mildly stressing the process you want to improve, then rest, then stress again, rest, repeat.

    The obvious delicate balancing point here is that my lungs are still damaged (how much is hard to tell because some of the damage is at a scale below the resolution of a CT chest scan.) And your pulmonary and cardiac system are intimately tied together, so if you hammer your pulmonary system too hard you'll really stress your cardiac system as well and the last thing we want at this point in the process is to create any cardiac issues. So I've decided to use a heart monitor in all my training and and set my max heart rate to 150 bpm (which for me is the top of zone 3). I'm also monitoring how my lungs feels and backing off if I start to cough or get lung pain.

    The encouraging news is that my lungs have really responded well to this training. When I get into the moderate hills I'm doing now (~300 vertical feet of gain over a mile), my lungs seems to open up a bit. No pain, I can breathe ok, etc. I'm not generating much power, which is probably due to a bunch of things from the various meds I'm on. But it sure feels good to have a training plan in place and see my body responding positively to the care and attention I'm giving it.

    The other equally important part of the equation is rest and it's been really great to be able to lie down and take little naps when I feel like it or just get off my feet and give my cardio-pulmonary system a chance to rest.

    So that's going to be my life for the next 5 weeks, I think. Putzing around the house, working diligently to improve my health, eat great food, get lots of rest and get the rest of this chemo sh*t in the can.

    BTW, compared to the pulmonary issues, this week after chemo has been a breeze. Have had the usual GI silliness to deal with but it hasn't been bad. I've also been learning how to handle the prednisone effects. It's a big, bad steriod with lots of possible bad side effects but it's big plus is that it should be helping to resolve what's going on in my lungs. So I'm learning to live with that in my care plan - losing muscle mass, feeling aggro at times, blood sugar elevation, sleeplessness, hot flashes. Hmm, sounds a bit like PMS, perhaps :)

    Anyway, the other really fun thing that this gave me an excuse to buy The World's Best Bike Toy. See my next post for details on the wonder geek toy called the Garmin 705...

    Wednesday, July 28, 2010

    Back to work for me and George's trek (by Susan)

    I'm back at work this week after all the craziness and worry of last week.   Work is its usual self, but it has been hard to concentrate with George at home and me worrying about his health.    I'm glad that George decided to take a leave from his job - now he can just concentrate on getting better.  I think that fresh air, walks, naps, good food, meditation and positive visualization are all going to help him get through this last month and then get back to the fully functional Geo.    I gave him a positive visualization this morning that I got from my little Unity book about divine light inhabiting every cell in his body.  It made me feel better just to read it! 

    George did telll me a great story today that just illustrates what an all around great guy he is.  He is trying to walk every day to get his lung function back.  When he came home from the hospital he couldn't walk up a flight of stairs without gasping and wheezing.  So the doctor told him on Monday that he should be doing some exercise to help increase his oxygen uptake.  He recommended walking and going up stairs.  George immediately interpreted this as "walk several miles each day then go to the gym and do the Stair Master for 3 hours".  

    He started walking each day - about 1/4 mile his first day back from then hospital, then 1/2 mile, then 1 mile, etc.  Today while I was at work he walked 5 1/2 miles - up from our house to Harper Lake, then around Davidson Mesa, then back to the house.   I was amazed!  When I asked him how he did it, he just said, "Put some sunblock on, carried water in my Camel Bak, and carried Shot Blocks with me in case my blood sugar got low."    So, our intrepid George went forth on his trek across Louisville, fully geared up and prepared like a Boy Scout!    I just thought that was such typical George that it made me laugh, then it made me kind of cry for a minute.  Because in spite of all the crap that has happened to him this year he is still Geo.  I don't know how else to explain it.

    The daily exercise plus rest plus the steroids definitely seem to be helping. He is talking much better, coughing less, and getting better color (probably a tan from 3 hours out in the sun today). 

    I did get out for a run myself this evening - I need to remind myself that I need to keep exercising and doing what I can to relieve my own stress.   And then I imagined the white light flowing through my cells too and it all felt better.

    Only 24 days to go before chemo is over .... we are tearing off the pages one by one.

    Monday, July 26, 2010

    Infusion 10/12 - Bleo toxicity update and silly pictures from the hospital

    Good afternoon, happy blog readers! Today your intrepid cancer patient and blogger is in for infusion 10/12. As I've frequently done in the past, here's a silly photo documenting the event:

    Maybe the crazy look is somewhat driven by the 80 mg of prednisone love I'm driving to clear up the junk in my lungs. Or maybe just wanted to spice up the picture gallery a bit.

    Ok, more news on the lung poisoning front. We had a good session with the oncologist and looked at CAT scan pictures from late June (when I had the initial issues) and last Saturday night. Even to the untrained eye you can definitely see some changes in both upper lobes of my lungs. Little horizontal white lines show up indicating that there is some new (and bad) structures in my lung. Given that all the cultures they took came back negative, the default diagnosis is interstitial pneumonitis caused by Bleomycin poisoning. There are a couple of good things going in my favor that suggest I may have a good resolution:
    • The total dose of bleo I got is relatively low (120 units ) compared to the threshold where they typically see bleo toxicity show up (> 200 units)
    • My lungs sound very clear
    • Although statistics vary on complete recovery, my oncologist has had all his patients with bleo poisoning recover full pulmonary function. So hopefully I won't be an exception to that rule!
    So, no more bleo, but eight weeks of prednisone. The prednisone does do some things that reduces your immune system function but it also does boost your white blood cells. So before I had a WBC count of 1900 and it's now 9000. Woo-hoo! I can go swim in sewers without concern of getting an infection. Well, probably not a good idea but I'm happy to look for any silver lining.

    In terms of recovering from the pulmonary basement I'm now visiting, it's mostly a wait and get better model. However, I am cleared to climb stairs as a way of improving my gas diffusion coefficient (the ability of my lungs to get air into the lung tissue). So I envision a lot of stair climbing in my immediate future! You know me - anything that involves hard work to get better at something is right up my alley.

    Finally, here's another silly picture of Caitlyn and I at the hospital. When I was in there my white blood cell count was low enough that I had to wear a mask when I was out in the hallways - to protect me from all the little bugs running around the hospital. I spent a couple of hours a day hooked up to an infuser getting a big dose of antibiotics so I named the infuser Irv. So here is Irv, Caitlyn and I cruising the hallways building up strength and working to get back to health:

    Well, that's it for now. Hopefully without the bleo this session will be unremarkable and we'll have a calm week. We're definitely ready for a little less excitement on the medical front!

    Sunday, July 25, 2010

    Big workout - 40 minutes of walking and 100 ft of vertical

    As part of my recovery I did my first power walk today - 40 minutes at a pretty good pace. This also included a MASSIVE 100 ft. vertical climb. And I was really gassed at the top! So that should show you where my pulmonary function is these days. I'm really, really worried about getting  my lung function back. Susan's being super supportive (as always!) and assuring me that I'll get better and I definitely am making progress - I could not have done this walk two days ago. And of course, it's BTBD. But it's still daunting to get so winded so easily. We have an appt with my oncologist tomorrow and this will be my #1 question - how much if any of this will be permanent, what should I be doing to help get my lungs back to being healthy, etc.

    Other than that big issue, I've felt pretty good all weekend. Had another small item crop up yesterday - started to get some Thrush in my mouth (caused by a fungus that you have in your mouth but is usually controlled by good bacteria in your mouth). The combination of chemo drugs and the prednisone are suppressing my immune system so the Thrush started to show up. White dots, gunk, can start to bleed. It's pretty easily treated with an anti-fungal medication you take orally so I started that yesterday evening and tonight it's much better.

    Other than that distraction, I've got no temperature, no other medical issues and generally feel pretty good. The weather here in Boulder County has been really nice and I've been outside quite a bit, just putzing around the house and doing house logistics that were a bit behind from me being in the hospital and under the weather the last couple of weeks. We've had a lot of family in town and they've been a great support. Of course, getting more people organized and moved around does introduce a bit of a hassle at times but Susan and Celia have managed most of that so it hasn't been hard on me. Tonight our house has emptied out so we're back to our normal Sunday evening rhythm of the two us and Socrates.

    Tomorrow I'll start Cycle 5, Day 15 (aka my 10th infusion). Without the Bleomycin I hope it will be pretty uneventful. After tomorrow I'll have only two more infusions to go! So I can definitely start to see the finish line of this part of the journey. Just got to get there in one piece!

    Saturday, July 24, 2010

    It's great to have George home from the hospital! (by Susan)

    Our crazy week is now over.  Greg and Lindsay headed back to Seattle and Caitlyn is off to San Francisco to run a half-marathon.  My Mom and brother Jim are still in town for a few days, and Ross and Maruja are here for another few weeks.    George and I are feeling bad that we didn't get our Crested Butte vacation in with the kids, but we are realizing that when a person is getting chemo you should always get travel insurance because you just don't know what is going to happen.

    It is so great to have George home from the hospital.  When he was gone the energy of the house was just all wrong.  He is doing better - breathing better every day and talking normally (which, for George, is quite an accomplishment because he talks a LOT and very FAST).   He is realizing that he needs to schedule in some downtime in order to keep from feeling really bad again, so we are going to plan in some "couch time" for him.

    This reminds me of being a little kid in Mayfield Heights, Ohio - my mom made us take naps every day after lunch.  Even then I was not a good napper and had to be coerced to ever sit still.  Mom would say, "You don't have to go to sleep - just sit on the couch and do something quiet for an hour!"  I would usually read a book for an hour while my younger siblings napped.  I realized later that the time was mainly for Mom - so SHE could get a much-needed rest during the day!

    Anyhow, that is what we are doing with George - he doesn't have to nap, but he has to have time where he is not working on projects or running around at least once a day.  We will see how this goes.

    With good home cooking he has already gained back the weight he lost in the hospital.  He was getting so skinny that I was worried that his butt was going to completely disappear! 

    Today the weather is so beautiful here in Louisville - mid 70's and sunny - I think we are going to take some nice walks and eat some healthy food and breathe deeply. 

    George is scheduled to get his chemo on Monday, minus the Bleomycin.  Only three more sessions to go - 30 more days.  As George said, this is the last big hill where you really want to quit, but you have to keep going because the end is in sight.  We just have to get him through this and then he can focus on complete recovery and getting his strength back. 

    Wednesday, July 21, 2010

    Jailbreak! I'm home from the hospital

    Good news this morning - my vitals are stable and I've come home from the hospital. I still feel pretty much like a rag doll but at least I'm a rag doll with no temp, good 02 sat, normal BP and heart rate and clear lungs. And on Saturday night most of those things were not true so big progress on the health front!

    One of my brother-in-laws has a nice phrase that goes something like "as long as you're upright and breathing, you're having a pretty good day." It gives a nice perspective when you start getting spun up about things like job stress, financial stress, etc. If you've got the basics of life working for you the other stuff is probably going to be ok and you shouldn't let it create too much anxiety.

    And then you have a couple of days where you're not doing either of those things real well - neither sitting up nor breathing. And you think, "wow, this is pretty simple stuff that I'm not doing that well. I'm getting pretty close to the bottom of the totem pole of things that humans should be able to do without trying. Hmm..."

    So, happy to be upright and breathing. My big workout this morning was 5 (count 'em 5!) full laps of the 2nd floor of the Flatirons hospital. And for extra credit I climbed the stairs once (hill workout!).  I immediately then had to go back and take a nap. So some serious recharging of the metabolic batteries are still required, I think.

    Incidentally, more good news on the bronchoscopy front. Still nothing back from the cultures so it looks more and more like I didn't have a pathogen. There are still a few things that could come out after the cultures have grown another couple of days but these can all be treated with oral antibiotics so that diagnosis would not require another hospital stay.

    Day 33 - big goal now is to get strong for dose 10 on Monday. In honor of the TdF I'm thinking of each chemo session as a stage. Certainly this last stage has had several "above category" climbs. A la Andy Schleck, my chain definitely came off a couple of times during this last 9 days of medical hill climbing but I'm feeling like I cleared the summit and will now gain speed flying downhill to Monday (hopefully NOT like Jens Voight!)

    Tuesday, July 20, 2010

    More on our "interesting" week

    Following on Susan's post I thought I would share a few details on how the last couple of days have gone from my perspective. In no particular order, these are some of the feelings/thoughts I've had since Saturday night:
    • Nurses are the foot soldiers of the hospital experience. Good ones are awesome and bad ones are truly a nightmare. Like most people that get sick, I'm singing the praises of the nurses I've had take care of me. With today's medical technology, the RNs do a lot of fairly sophisticated tasks with patient facing technology, setting up flow rates on infusors, doing lots of plastic plumbing issues to get everything attached to you, etc. If you don't have good fine motor skills you're not going to be a good nurse. And of course, striking a good balance of professional detachment yet empathy for the patient really affects the quality of care delivered. My experience at Foothills here in Boulder has been really great in this regard. A good group of nurses who I've been really happy to have with me in the trenches.
    • The physical state of the hospital matters. This place is really, really nice. If you're going to be stuck in prison, it's easier to tolerate being in a really nice room, art on the walls, slate tile in the bathrooms, balconies on your floor, all private rooms, etc. Well the private room thing is also easy to swing when your immune is compromised. If you're really sick like I was on Saturday night none of this stuff matters to you. But as you get better and watch a storm cruise over the Indian Peaks from your nice window on the west side of the building, it does make the process a bit more bearable. Just hope no one from my insurance company is reading this blog :)
    • The human body is a really, really complicated piece of equipment. With all of our medical technology, there are still lots of situations where everyone ends up scratching their heads and saying "Nope, we don't know what's going on." Here's an example from my recent bout of physical craziness. I had a bronchoscopy yesterday. They sedate you, then stick a LONG tube up your nose, down your throat and into your lungs. They inject saline, then suction it out to get lung fluid and stray cells. In my case, they also did a small biopsy to get some tissue for pathology studies. Given the symptoms on the CT chest scan I had Saturday night, the infectious disease doc on my case proposes 4 possible pathogens:
      • viral pneumonia
      • bacterial pneumonia
      • A pneumonitis type of disease named PCP that HIV patients frequently get that is caused by a very common fungus in the environment (think toadstools growing in your lungs. Or athlete's foot.) People with normal immune systems never develop this disease since the fungus is all over and our immune systems are well trained in fighting it. But if you're in day 130 of chemo and your immune system is beat up, this kind of thing could get a foot hold in your lungs. If left untreated it will probably kill you so serious stuff. 
      • Another kind of pneumonitis  that is caused by a protozoa. basically another type of bug that does bad stuff in your lungs.
    • So as of 4:00 pm this afternoon, the cultures from the pathology are all negative. So this suggests that there's no pathogen causing the problem. This brings us back to the idea of bleomycin toxicity. This causes structural problems in your lung tissue. Your body generally doesn't like it when this kind of thing happens and it rallies white blood cells and inflammatory mechanisms to the site of the damage. Your lung tissue gets inflamed and this is what shows up on the CT scan. But, when they looked at the tissue from the biopsy under the microscope, they didn't see the kind of cellular changes caused by bleo poisoning. But the sampling size is really tiny - It's basically a  needle biopsy done through a really long tube so it would be easy to miss getting physical evidence of this kind of problem even though it's present in your lungs.
    • And, let's throw in the Jeopardy-like "daily double" event I had today. After lunch today, in the space of 15 minutes, I lost most of the vision in my right eye to what sounds like a visual migraine. No pain at all but this jaggedy overlay of white light around everything, double images on various structures in the field of view. And in 15 more minutes it was completely gone. All the while, my left eye was fine. So Occam's Razor maybe suggests that big does of antibiotics I had just gotten was the culprit. Or it might be just coincidental; my body at this point is such a train wreck of chemicals that having 1 data point on almost anything can be hard to diagnose.
    • So with this kind of symptoms and evidence, here's how the decision process goes:
      • We gave you a bunch of stuff to kill pathogens, but we can't find any pathogens. And right after we gave you the last dose of this stuff, you had some crazy reaction. So, since we don't want to hurt you we should just slowly back away from the lab bench that is your body. So no more antibiotics.
      • The one thing we have given you that would work in the absence of a pathogen is the prednisone that reduces inflammation caused by bleo toxicity.
      • You were really sick when you came in, we gave you stuff, you got better. 
      • End result: stop the antibiotiocs, taper the steroids over time.
      • And of course, we're basing this all on lack of evidence. So if we're wrong, and you are getting eaten up by some pathogen, you'll get sick again and we'll start this all over. Yeah! Touching the disease elephant in a dark room - again. 

    So the good news is that if I have a good night tonight I'll go home in the morning, continue to feel good and get the rest of my treatments on time, minus the bleomycin.

    34 days to go. Hopefully they'll be a lot more boring than the last 8 have been!

    This is our worst week yet (by Susan)

    After four months of being the star chemo patient at the Foothills cancer center, George hit a big bump in the road last week.  This past week has been pretty terrible (i.e., exhausting, terrifying, and, in George's case, painful) but there are signs that things are getting better.

    After a big weekend 2 weekends ago (50 mile bike ride plus 4 hours in a crowded bar watching the World Cup on Sunday) George came down with a fever on Sunday night.  After some Advil the fever was down on Monday morning, so he got his chemo on schedule on Monday, including the Bleomycin, which had been removed from the regimen the previous time due to some concerns about lung toxicity.    His while blood cell count was also really low, so they gave him two shots of Neupogen, a white-cell boosting drug that makes a person feel kind of bad (George described it as having his bones hurt).  He continued to get fevers and chills off and on all week and saw the doctors several times, but the fevers weren't that high and the doctors adopted a "wait and see" attitude.

    We had planned a trip to Crested Butte this week with all of our kids finally in one place, which only happens about once a year.  We had kids flying in from Europe, Seattle, and Montana to be with us.  We also have my mom and my brother Jim visiting Colorado this week, although they are staying with my sister Celia.

    Based on George's prior experience with the chemo, we thought he would be fine on the trip to Crested Butte and he could relax and just participate in the activities that he felt like doing during that week.  The kids had all assembled here by Saturday and were ready to head up to Crested Butte on Sunday, when on Saturday night George came down with a really high fever (103.5), chills, shakes, and difficulty breathing. By this time it was about 10:00 at night, so I made the call to take him to the emergency room to get looked at.  Caitlyn came with us, and after a few harrowing hours, he was diagnosed with pneumonia and they kept him in the hospital that night after putting him on heavy duty fever reducers and IV antibiotics. 

    The next day he had several doctors looking at him and they basically told him that the lung problems could be due to a bacterial infection, a fungal infection, or bleomycin lung toxicity, and they scheduled a lung biopsy to figure out specifically which one it was.  Meanwhile, they put him on antibiotics, anti-fungal  meds, and steroids to help his breathing.   They are saying that he will be in the hospital until Thursday of this week.

    So, we had to cancel the Crested Butte trip and all the kids are here in the house with me and supporting me while I am trying to support Geo in the hospital.   I kept thinking about the old Scottish poem - "the best laid plans of mice and men go oft astray" - and I should add, especially when a person is getting chemo.

    The good news is that all of these meds are helping George to start feeling better - he was breathing much better and was able to do a few laps around the Foothills medical center today.   The doctor said that these kinds of lung infections are not uncommon among Hodgkins patients - the lowered immunity and the bleomycin treatment make patients susceptible to lung problems.   It was all probably the scariest episode that we have had through this whole thing, and I'm just glad we have a really understanding family who love and support us so much.

    We will have to see how the week progresses to know if he can get his next chemo session on time.   I think at this point the Wing Woman could use a new set of wings!