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!

Tuesday, July 13, 2010

When you're kids have a temperature and say they feel crummy, they ain't lying

Another interesting day in the chemo world. Here's the exciting tale:

On sunday night I started feeling slightly crummy so I took my temperature and it was elevated a bit - 100.3. Huh. Last week I had a very hard week physically - rode to the top of Flagstaff on Tuesday, cardiac stress test on Wednesday, 50 mile ride to Jamestown on Saturday and then had to standup for 3 hours in a hot, stuffy bar on Sunday to watch the WC final. So when my temperature elevated a bit I wasn't too surprised - figured it was just my body giving me some feedback that I had pushed pretty hard.

Took some advil and went to bed. And here's where the fun 24 hour tour ride begins:

  • 100.7 at 3:00 am (woke with shaking chills). 400 mg of Advil and shakes went away, got back to sleep. 
  • 101.6 at 6:00 am. Took another 400 mg and called the on-call doctor. Since I wasn’t exhibiting sore throat, diarrhea or cough they decided just to wait to see me until my afternoon appt.
  • Called in sick to work, laid flat on my back for 4 hours, pushed lots of fluids and advil and got my temp down to 97 by the time I got in the infusion center.
  • Got through the 4 hours of infusion and post chemo lunch date with Susan ok.
  • 5:30 pm, more chills. Temperature was 96.5 but because of the chills took another 400 mg of Advil.
  • Laid down for about an hour.
  • 6:30 pm, temp has spiked 102.3. 400 mg more advil. If you're wondering what it feels like to have your basal temperature go up 6 degrees in an hour while lying flat on your back, the answer is - not good. Head sweats. Head hot. Eyes hot. It's hard to describe how your eyes can feel hot but mine did. So this is the part where when your kid looks like a rag doll and they've got a temperature - they're not kidding. As adults, I think most of us don't get high fevers very much so you tend to forget how debilitating it can make you feel. I've been on the chemo sauce for 127 days and I've had some bad days. But that hour yesterday afternoon while my temp was spiking was by far the most debilitating. I did not feel like moving an inch. Uggh.
  • 6:30, call the on call doctor again. They have no idea what’s going on. My picc line site looks fine (no evidence of infection) so we’re just in a wait and see mode. They did tell me to stop taking any fever reducing meds so they can see how bad it gets. Fun stuff. I thanked her in advance for giving me such a nice evening.
  • Since I couldn't take any fever reducing meds, I applied some basic heat transfer logic to the problem ( I am, after all, an engineer and I have actually taken one heat transfer course so this clearly qualifies me as an expert!) How do you get something cool? Three ways - conductive, convective and radiative heat transfer. I decided to focus on convective so clearly I needed to get my body's cooling elements exposed to more air flow. So taking a page from Cat's book of optimal sleep positions (insider family joke!) I exposed the bottoms of my feet to get more air flow:

  • I also exposed my hands, head and upper chest for maximum heat flow:

  • I was toying with the idea of introducing some conductive heat flow techniques into the solution by applying the age old cold-compress-to-the-forehead technique but felt like that might be crossing the line into disturbing the engineering data we're trying to collect (aka how badly is my temperature misbehaving). Probably a lame distinction but that's where I ended up. 
  • Also pushed some cold fluids - 32 oz of lime twisted sparkling water (hey, just because you're flat on  your back with a fever you don't have to settle for tap water!)
  • With this great engineering project in place, by 8:00 pm my fever starting coming down. 
    • Watched the Star Trek movie on my laptop. This is viewing number 6 (or 7?) for me so I can now quote many pieces of dialog. Susan found this to be initially endearing and then slightly irritating, I think. So I guess I'm not the best person in the world with whom to watch this movie. Just another rugged chore for the wing-woman!)
    • 99.1 at 11:00
    • 97.5 by midnight
    • 97.9 this morning at 6:00 am. (and had a good night's sleep. I woke up at one point with some head sweats but I attribute this to the Bleomycin. Didn't feel feverish and my temp was ok at the 6:00 am data collection point)
Another day or two of lying low and hopefully whatever was upsetting my temperature will clear itself up. Just another fun bump in the chemo road course, I guess! More news as it happens...

Clean PET/CT scan - yeah!

Last Thursday I had another CT/PET scan as suggested by the protocol we're following. Yesterday I got to review the results with our oncologist. All really good news on that front! No elevated cellular activity in any of the regions where I had my tumors and all the nodes are gone/normal in appearance with the exception of one node. For the type of Hodgkins I have (nodular schlerosing) it is pretty common that a node forms in your lymph node that looks abnormal even after all the bad cellular activity is gone. It can take several months for this node to go down and is basically a vestigial sign of the disease. I'll get another PET scan 3 months after my chemo completes and that will be the next big diagnostic milestone. So the summary from the scan is that I have no visible sign of disease. There a bunch of axial views (top down) that are provided in 3 mm slices that are great for looking at the details of the tumor sizes and metabolic activity. But they're pretty hard to understand and I wouldn't do them justice in a description here. The simple view is the one below. In March, there were a bunch of black (high metabolic activity) chunks in my chest and throat. As you can see below, all of those are gone. The black spots on this scan are all normal - these are all my organs flushing the radioactive sugar from my body (spleen, kidneys, bladder, etc.)

Another positive note about this scan is given how clear things are and how small the last node is, I'll probably not need any radiation. We'll get a radiation consult in August to make sure we're consulting an expert (the blood guys and the radiation guys are connected in our cancer center but distinct because they're expertise and treatment mechanisms are quite different) but the strong sense is that no radiation will be needed.

Pretty happy about all of this - now just need to get through another 41 days of chemo craziness and then start the post chemo healing process. We're getting there!!!

Back on the bleo!

Well, the sheriff's back in town (translation, my oncologist is back from his sabbatical) and he's decided that the whole shenanigans of a couple of weeks ago had nothing to do with bleo lung poisoning. And Bleomycin is an important part of the long term cure for Hodgkins so he has decided to put me back on the Bleo. Susan and I were both kind of expecting this. The PA we were using in his absence is a very compassionate, committed care giver but is a bit hysterical in her treatment. We think she kind of panicked over the tachycardia episode and didn't provide a clear picture to the other oncologists about what was going on. Susan and I both had some hard questions for our oncologist about how their medical team is working together. It's troubling that he could leave town, his backup could come in, change the treatment plan after a consult with the rest of the team, he comes back, looks at the same data and then reverses the decision. At the time, we realized this might happen and we knew from the timing of things that I'd only miss one dose of bleo before he was back and the PA was pretty adamant that they wouldn't give me the bleo.

As a result of this, we've blackballed the PA and told the cancer center that we don't want to have her involved in our care plan going forward. I sure hope they give her some pretty strong feedback about this; I really feel like she put a lot of unnecessary angst into the treatment plan and basically pushed us in the wrong direction. And while being very professional, the oncologist also stated that from here on forward, whenever I'm in that building I should see him and no one else. So a pretty strong, backhanded statement that he's not confident that  his team is going to do the right thing by me.

The other thing you realize is that once you get into a treatment like this it's really hard to switch care givers. If you get into a conflict with your care givers, it's not likely that you can go down the block and have someone pick up your case. For lots of medical, legal and insurance issues this kind of change is probably close to impossible. And of course, the treatment protocol says "full doses, on time" maximizes the effectiveness of the treatment. So while you're shopping your case around, the bad tissues inside of you have a chance to regroup.

Another note for future patients reading this. I never thought to ask, and no one ever volunteered the fact that the oncologist would be off my case for a month in the middle of a six month long treatment plan. I strongly suspect that if he had been in the middle of this we probably wouldn't have stopped the bleomycin.

So yesterday I got a full dose of Bleo and it is now happily (?) doing its RNA cell replication destruction dance on whatever bad cells I have left in me. Another nice part of this is I'll get off the prednisone - last dose is 10 mg tomorrow. Susan's been noticing that I've been a bit more snappy than usual so I think she's excited about getting that out of my treatment plan, along with all the other possible side effects - hypertension, muscle weakness, bone density reduction, elevated blood sugar, reduced immune system response, etc.

Thursday, July 8, 2010

cardiac stress test complete - everything looks good

Following up on the problems I had two weeks ago with some episodic tachycardia we decided to do a cardiac stress test to see if we could tease out any underlying cardiac problems I might have before they manifest themselves in some unpleasant way (like, dying...)

I've had this test twice before since both my parents had a history of cardiac problems and my GP is pretty in tune with sports related physiology. We use Boulder Sports Medicine for the test. It's a grueling, exercise to exhaustion test that you do on the bike or running treadmill while your cardiac function is evaluated.

Here's how it works:
  • Get hooked up to a 12 lead EKG
  • Heart rate and 02 sat monitor on your finger
  • blood pressure cuff on your arm
  • Lie down for 5 minutes, get a good baseline EKG, heart rate, blood pressure reading
  • Warm up on the bike. The bike is hooked up to a laptop that runs a program that drives resistance on the bike and reports back on power output from the bike. Very cool. You can see your mph, cadence, wattage output. Very Chris Carmichael-ish...
  • After a few minutes of warm-up (for me, that's doing about 18 mph putting out 100 watts), the hill climb begins...
  • For the first four intervals, wattage is increased 25 watts every 2 minutes.
  • The first few increases are not very noticeable in terms of difficulty. Still spinning between 95-100 rpm, speed 19-20 mph, as power output goes from 100-200 watts.
  • After the first four intervals, the wattage increase goes up 25 watts every minute. In physical terms, it's easiest to think of this as climbing an ever steepening hill keeping your velocity constant. Take your body weight, move it down the road at a certain speed and you'll be generating a certain amount of power to overcome wind, road and gravity resistance. Now, tilt the ramp of the road - to keep the same velocity you have to put more power into the bike. 
  • The cool thing about the bike is that it has variable resistance that's tied to the required power output. So if you start to be a lazy ass and slow your cadence down, the bike just makes the resistance harder. So there is no escaping the fact that unless you completely give up pedaling, you WILL be generating the amount of power that the program is demanding you generate. So there is no where to hide. Awesome :)
  • For me, from 200-300 watts is where the real party happens.  Working hard and every minute it just gets HARDER.
  • While this is going on, the physiologist is taking blood pressure, heart rate, 02 sat readings and the doctor is watching the EKG for any funkiness.
  • Two years ago, I made it 30 seconds through the 375 watt level. Yesterday I popped in the middle of the 325 watt minute but managed to moan and groan (and I do mean actually moaning and groaning) through the end of the 325 watt interval. So in essence, I blew up about 90 seconds earlier than I did two years ago. That feels about right in terms of what I've quantified - I seem to be about 15% off from what I could do when I was healthy in terms of average speed on rides, etc.
  • After that, you crawl off the bike, lie down and they watch your EKG and blood pressure as you recover.
The summary was that everything looks normal. BP, EKG, heart rate, O2 saturation all good. Power output down but not surprisingly so given all the things my body has been going through in the last 5 months.

I chatted with my doctor about doing the Copper Triangle and he said it was ok to do the tour but that I should wear a heart rate monitor and keep my heart rate < 150. Obviously my body is going through a lot and we want to find a balance point where my exercise helps me manage the chemo but I don't stress myself so much that the exercise regimen itself becomes too burdensome.

So all in all, a good outcome and I've definitely got some increased piece of mind that so far, my core organs seem to be holding up ok throughout this process.

BTW, if you're interested in getting this done to help with your training, I'd highly recommend these guys. I suspect it's a bit pricey if your insurance isn't covering it but it's really interesting information to get about your body, how you train, etc.

As another data point, they tested a local pro bike racer earlier in the day and he popped at the 475 watt interval. So that explains why he races bikes for a living and I write software :)

Wednesday, July 7, 2010

Anniversary (by Susan)

The last few weeks have been interesting - filled with many ups and downs.  As George posted, he had a scare with the Bleomycin - the doctors at the cancer center were worried that he could be at risk for getting "bleo lung", which could make him a permanent lung cripple.  The doctors are very aware of George's athleticism, and don't want to do anything that could compromise it.    So, he had lots of tests, and is now off of Bleomycin and has substituted Prednisone instead.  The Prednisone has the double effect of reducing any lung inflammation that he might have, and it is also a cancer fighter in its own right, so has been substituted in George's chemo regimen.  

If you know anyone who is on Prednisone, you know that it can make a person driven and hyper, and this has happened to George to a certain extent.  Kyle and I have been giving him a hard time about his "roid rage".  He's not really full of rage - he just wants to get up and start doing projects.  For example, this morning he got up and fixed our shower door at 5:30 a.m.   I went for a nice early morning run in the drizzle and when I got back it was all ready for me to take my shower.  He also was painting the bathroom and taking my bike into the shop to get a new gear cluster put on the back wheel.  It's nuts, because this new regimen has the combined effect of improving George's lung power and making him feel more energetic.  Plus being off the bleo has made the last round of chemo less severe.  All in all, he is starting to feel better and, with only four more chemo sessions to go, we are starting to see the light at the end of the tunnel.

Two weeks ago was George's and my 9th wedding anniversary.    It made me start thinking about things that can happen during a marriage.  When you get married, you (usually) do it with the highest of hopes - you never think anything bad is going to happen and you only think about the big plans you have for the future.  Well, life has a way of changing your plans!   Within 16 months of our wedding I was diagnosed with breast cancer and seven years later George was diagnosed with Hogdkins lymphoma.  Does that seem unfair?  Do we have "bad luck"?  Just the opposite: in looking back on it, I think we really have had good luck and I wouldn't trade any of it.  Does that seem strange?  When I was down with multiple surgeries in 2004, George was the best possible partner  that a person could ever have.  He seemed like an angel to me - he was so loving and understanding and supportive.  I realized I could lean on him and let him be strong for both of us during that time.

Now, through George's illness and treatment, I have to be the strong one, and I relish the opportunity to give George back even just a fraction of what he has given me.  I have seen him through the worst possible down times, and his strength and determination to get through this almost barbaric treatment just makes me love and admire him more.  I know it sounds like a cliche, but we get to realize that we are more than our hair, our athletic performance,  or (in my case) our missing body parts.

I know George will say that this is hokey - that he doesn't feel he has gained wisdom from any of this, that it just sucks and he would trade all of his so-called wisdom to go back to being superbly healthy and being able to not think about it.  And, selfishly speaking, I would like to be able to think that George will always be strong and healthy and better than me at everything (except singing).   But I would never have been able to see this side of George's tremendous heart and spirit.

I was reading a little bit about Lance Armstrong's Live Strong foundation today.  When I was diagnosed with cancer his book really helped me.  Because, I thought, if Lance can get through this and not give up and go on to win the Tour de France, then I can do it too.   And that's what I want to do, and what I want George to do - to live strong, to not give up on our dreams, to do all the things we were put on this earth to do.

So, we are going to do the things we love.  We are going to be seeing all of our kids here in Colorado starting this weekend with Ross and Maruja flying in from the Netherlands.  My Mom and brother Jim will also be visiting next week,  and then Greg and Lindsay and Caitlyn the following week.  Kyle is here all along.  With Celia and Brady, we are going to have one big family party.  We are going to train for the Copper Triangle bike tour and see how far we get.  AND - best of all, we are planning a trip with just the two of us when George's treatment is done.   Take THAT cancer!

Thursday, July 1, 2010

Not all the stories in the cancer center end happily

On Monday I met my first fellow patient that looks to be heading towards a bad outcome. It's been interesting that everyone I've met so far has had a pretty good prognosis on their outcome. As one of my chemo buddies said - "If you're here, there's hope." Which is a bit sobering - this patient population has already been sorted into the ones that are strong enough for chemo and for whom the chemo has a chance of helping them. We don't even see the ones that are diagnosed such that chemo isn't deemed to be possible or useful. Whoa.

My session started like all the others with a quick trip to get my blood drawn. In the room was a frail little woman in her mid-sixties, with the same kind of peach fuzz head that I'm now driving. In an attempt to boost her spirits, I told her a story about a tiny bit of sideburn I can still grow and how happy I was to be able to shave it and do something to keep my appearance somewhat approaching normal. I then went on to talk with her husband (who had a big beard and head of hair) how another "nice" thing about chemo was that I've lost my nose and ear hair, so I don't need to worry about the geezer guy problem of hair growing out of your ears and nose.

The husband and I then go around the corner to sit in another waiting room while Rose (his wife, whose name I've changed) got her blood work finished. I'm feeling pretty good about things - hoping my blood work is normal, hoping that I feel better this upcoming week without the bleo. I'm casually chatting with the husband Kevin about this and that when he drops the big bomb on me.

"That's my beautiful bride Rose" he says, with just so much love and tenderness in his voice.

And I nod, happy to see that she's got some such great support in her life and that they've managed to keep their love strong in the face of such a hard journey.

"We didn't think she'd make it this far. Her cancer came back this winter after 5 years. She was too weak for the chemo so they stopped it. But she's still here!"

And I just about lost my shit right there. The next day was Susan and my 9th wedding anniversary and Susan will be cancer free for 7 years in October. And I'm thinking to myself - holy shit - that could be me and Susan in 5 or 10 years. Back in here, sick again. This is my nightmare come to life - get better, think you're over all this and then years later, it comes back and you're torn away from all the things in life you love - your wife, your family, your body in motion - the whole smash. F__king hell...

And then Rose comes shuffling into the waiting room and we all sit together and make small talk - about how chemo makes you really sensitive to temperature changes (I describe it as losing your core mojo - your body core isn't strong enough to manage environmental changes). Kevin does most of the talking and Rose is more quiet, smiling every once in a while but not saying much. I sense that she's already started to drift away from this world or maybe she just doesn't have the energy for the interaction. It was just all an incredibly powerful, moving, scary scene. La-la-la, let's talk about dripping noses, no body hair and skip past the fact that you'll probably be dead by Labor Day or Halloween.

I then got called back for my doctor consult and told him that I would see them in the infusion room. And here's the pansy-ass move I made - when I went back to the infusion room, I chose an aisle where they weren't sitting. How's that for lame? I just felt like I had to protect my energy - I am going to get better, I am going to live for a long time still and I don't want to sit with someone for two hours that's dying. Just don't have it in me right now! Maybe ten years from now when I'm still  healthy I'll be able to face that but on that Monday afternoon, I didn't have it in me.

So all the stories coming out of the cancer center don't have happy endings. I hope that Rose's body can muster the energy to handle the chemo and that helps her get better. More likely, she'll stop at some point, have a few reasonable months and then go into hospice and pass away. And Kevin will be left behind, his love for Rose still strong but with a giant hole in his life.

I thought about Rose a lot these last couple of days, wondering how her days are and thinking about the time Susan and I spent in CB this past weekend. I think about climbing hills on my mountain bike, I think about watching the young kids in our group move around with all their kid energy, I think about watching the crazy folks in CB doing their wacky mountain town celebrations.  And I imagine that these are things that Rose will never get to experience again.

I'm not sure what comes after this life, but I know that I like being here and I know that the world is better when couples like Kevin and Rose are together. I'm also sure that at some point, in some way they'll be together forever but the transition from here to there is probably going to hurt - a lot.