Thursday, March 31, 2011

Is my cooking really that bad? Plus vegan superfood smoothie (by Susan)

After watching George nearly barf at dinner and seeing today that he had lost 8 pounds in the last week, I decided to try to make him some smoothies.  The nurse today told us that sometimes patients who do not want to eat anything will tolerate food if it is in smoothie form.  So, I trekked on over to Whole Foods (I made George wait in the car with his cell phone on) and got some smoothie ingredients.  I whipped up a truly tasty vegan smoothie that is packed with nutrients and also with calories, so don't drink this if you're trying to lose weight!

Here is the recipe:

Vegan Superfood Smoothie
1 banana
1/2 cup blueberries
1/2 to 1 cup strawberries
1 scoop of soy protein powder
1/2 cup Almond Dream ice cream (I used Vanilla)
1/2 cup Almond Breeze milk
1 Tbsp coconut oil
1 Tbsp Agave nectar

This smoothie has potassium from the banana to help George's electrolytes, 23 grams of protein, and 530 calories.  The blueberries and strawberries add antioxidants and vitamin C.   I used Agave nectar instead of honey because George is not allowed to have honey on the neutropenic diet (it may have bugs in it from the bees).  If you have never tried it, agave nectar tastes really good and has a low glycemic index - that is, it won't raise your blood sugar excessively. I put in the coconut oil as it is supposed to strengthen the immune system, is antibacterial and antifungal, and it adds calories.   I added the soy protein because the doctors have told us that it is really important that George gets adequate protein to help his tissues recover from the chemo.

Here is a pointer to an article about the benefits of coconut oil from the Huffington post if you are interested:

He seems to be able to tolerate drinking it, so maybe we can get some calories into that boy!

Day 3 update - so far, so good

Hey, all. Day 3 of my new immune system and things are going well. My platelets, WBC and RBCs are all still trending downwards which is normal for the protocol. All the subsystems are holding up - stuff moving through my GI tract, no abnormal bleeding, no vomiting, normal temp, clear heart and lungs. I've got the beginnings of a couple of mouth sores but not too bad. There are a whole bunch of bad things that could be going on at this point in the process so I'm thankful that nothing too serious is going on.

The big issue comfort wise is my stomach. It is NOT HAPPY. It is saying "DO NOT PUT ANYTHING INTO ME." Not nauseated, but crampy. It has definitely put out the "FOOD IS NOT WELCOME" sign. The chemo has really trashed my stomach lining and my tummy's reaction to this assault is to close down. The problem is that not eating is not all that conducive with feeling good. So my big battle has been to get food into me. Getting a cup of soup down feels like climbing Flagstaff. I'm down about 8 lbs in a week and of course, I'm not losing all fat but a combination of fat and muscle as my body scavenges calories wherever it can find it. I'm wearing shorts today and my once powerful calf muscles are now reminiscent of the 80 year Italian uncle's legs you were always embarrassed to see at family get togethers. So it's definitely grind time. I may have up to a week more of feeling like this which is somewhat daunting but there's no getting out of it so I'm prepared to just crawl through the next few days.

Ok, that's it for now! Back to watching the minutes s-l-i-d-e by and hoping that eventually my stomach lining starts to settle down.

Tuesday, March 29, 2011

Happy 2nd Birthday Geo! (by Susan)

This is to Geo - Happy, happy second birthday! Everything went well today with 5 more bags of stem cells delivered to our guy.  They gave him a lot of Ativan and Benadryl, which made him pretty sleepy, but he was still able to work on a Mongo coding project he's been doing (go figure - he likes coding better than jigsaw puzzles).   He still smells like creamed corn gone bad from the DMSO solvent they use, but the stem cells are now all circulating back in his body. 

I am getting good at cooking very bland dinners - tonight we had little fake chicken patties made of soy and wheat gluten, white rice, and mixed vegetables.  Yum!  The good thing is that George was able to eat - a lot of transplant patients completely lose their appetites during this period. 

So we can give our cheer - GO stem cells, GO - back to George's bone marrow where you can create your factory for his brand-new immune system!  It usually takes 12-14 days for this "engrafting" to take place.  We will be back at the hospital to get him checked and to get IV hydration and nutrients until engrafting happens.  He may also have to get transfused red blood cells or platelets if his counts get too low.  He is on all kinds of preventive drugs to keep him from getting sick while his white blood cell counts are down to zero.  This is the tricky time when we have to keep him totally germ-free until his new immune system can grow.

So, GO GO stem cells!

2nd birthday photos

Morning, all! Down in the infusion center here at 18th and Williams in Denver for the 2nd day of the homecoming for my little white cells. Just sitting here getting a bag of fluids before they march the 2nd set of my BFFs up my chest and into my superior vena cava, so I thought I would share some birthday photos from yesterday.

Pre-party activities start with getting the warming bath going:
The blood is frozen and needs to be warmed up before it goes back into me. Pushing a blood slushy through the tubing wouldn't work too well and I suspect it might give you the ultimate Popsicle headache.

The party starts when the delivery service rolls in the super-cooled bathtub with my cells:

Put on the big gloves, dive in and pull out some super-cooled Geo blood:
If you look closely, you can see the condensation as a white cloud running down below the package. Hoping they REALLY warm that up before it goes into me.

Next, they give me this:
Hmm. Not a good sign. Your blood is stored with DMSO, which is a solvent that keeps the blood from getting damaged when it's frozen. But, when you get the DMSO/blood mixture it can make you a bit nauseated.  Right! On to the next step, thawing the blood out:

While the blood is warming up, get the plumbing prepped for the actual transfer operation:
Ok, the blood is warmed up and we're ready to go:
But let's just wait a second and double, double, double check that this is actually my blood. Since I'm not a vampire, I'm pretty sure the only blood I'd like to get is my own. Consult the paperwork:
Ok, it's mine, we're set to go. Here come's The Big Push of Life back into me:
And a view from the wing-woman's seat of the festivities:

And it goes in - and I barf. Instantly. Well, maybe not instantly, but < 60 seconds from the start. Ah, well. But out of it you get to wear a cute little dishrag on your head:

Through it all, of course, Susan is here to cheer me on, defend my interests and kick ass as required:

The whole procedure goes pretty quickly - probably < an hour for the transplant. And at the end of it, I have more healthy blood cells then when I started:

So, hope you enjoyed the tour! It was a good day, only tempered by the fact that I was definitely feeling a bit beat up from getting 18 doses of chemo last week. I suspect that I'll be feeling intermittently yucky for the next week or so while my body heals from the chemo. But along with that healing I will be getting my immune system reset which is super exciting!

Monday, March 28, 2011

The boys are back in town

I'm happy to report that my wandering stem cells have started to return today to their old stomping grounds in my bone marrow. I got about 65% of them today and will get the rest of them tomorrow. All in all the procedure was pretty uneventful. I had a bit of nausea when they started but that quickly died down. The biggest side effect is that the solvent they use to thaw the blood cells (DMSO) has a pretty strong smell. I can't really smell it but to Susan I smell like a 6 ft tall Chinese baby corn. Huh. Anyway, this should go away in the next couple of days.

I've got a few fun pics to post of the process, which I'll do tomorrow. For now, some sleep and positive thoughts about my new buddies settling down and getting to work building me a nice new immune system.

chemo hot flash, breast plate pain, pulmonary happiness

Continuing my discovery of creative ways that my body can feel, last night I dipped my toe into waters normally reserved for menopausal women and had a nice (?) chemo hot flash. My GI tract wasn't too happy last night and I was just sitting in front of the computer looking at some Android code. Suddenly, I felt hot. Went from feeling normal to my head sweating in about 30 seconds. Flushed, feverish, the works. Got up to go take my temperature and standing up didn't help matters any. Took my temperature and it was fine. Wow, that was not a great feeling. Lied down in bed for a few minutes and the symptoms passed, got a shower and did a bit of meditation before bed. Got through that little event without any permanent trauma so we'll just chalk that up to experience, eh?

The next step last night was that I got to experience some breast plate pain. Initially I thought it was heartburn from the chemo but now I'm thinking that it's because the monster chemo is digging into the bone marrow in my breast plate, killing all my slightly unpredictable white blood cells that are the cause of all this craziness. It kind of feels like a burp that won't come up. I noticed this because I had also had some breast plate discomfort when I was generating the 2.39 million stem cells last week. I believe this is just a transient discomfort so no big deal.

The final change for the better I noticed last night is that I'm breathing better. At the height of my GI discomfort it was a little uncomfortable to belly-breathe because I had so much gas in my stomach. Given my experience last summer with pulmonary issues and the fact that the BCNU med in the BEAM protocol can cause some pulmonary toxicity I've been very sensitive to any changes in my lung function. My PFT #s continue to be great so that's good news but it's still scary when you don't feel like you can breathe completely normally. But with the slight improvement in my GI trace over the last 48 hours I feel like my breathing has gotten back to normal.

Had a pretty good night of sleep last night although I was up at 3:30 am doing e-mail with some coworkers that are in England on business. Guess I'm a bit anxious about getting my stem cells back! I don't know if smart phones are the best or worse thing that ever happened to insomniacs but it's certainly convenient to be able to roll over, pick up the phone and browse the web for a few minutes in the middle of the night without disturbing (too much!) your bed partner.

Well, that's the quick recap from last night. This morning we're starting the stem cell transplant process. I'll take lots of pics and post later today once I've got some of my little guys back inside of me!

Sunday, March 27, 2011

Goodbye Socrates - (by Susan)

Boy, last week was a kick in the head.  George did really well with his 6 days of 18 chemo treatments.  No kidding - he was on the bike trainer today and yesterday, and must have walked about 6 miles over the weekend. .  He is eating pretty well in spite of the trauma to his digestive track that the chemo produces.   He has enough nausea and mouth discomfort at this point where he does not want any spicy or acidic foods, or other foods that he just thinks are icky.  So, I have brought out my Mom training and am cooking for him like he's an elementary school kid, if that kid were vegan (lots of mashed potatoes, white rice, soups, pasta, etc.)   This seems to be going pretty well.    However, the chemo has started to hit and he is feeling pretty tired.  I think that this tiredness will progress until it hits a low point about 5-7 days post transplant.

The really sad news is that in the midst of all this our cat, Socrates, died last week at the animal hospital.  Kyle brought him to the vet on Monday because we had noticed that he had lost weight, he was very thirsty, and his appetite was off.   He was also acting sluggish and he was walking as if his legs were in pain.   The vet thought it was feline diabetes, so she gave him some special food and they gave him IV hydration, which often works.  When that didn't do the trick, they gave him insulin, but that still didn't work.  We talked to her and decided to keep him in the hospital with the insulin shots until he improved and we could take him home.  We were expecting to get him back this weekend, so we were surprised on Friday morning to get the call that he had not made it through the night.  The vet had the theory that it wasn't diabetes, it was pancreatic cancer, and the insulin treatments didn't work because his poor little pancreas was just shot.  George and I are both pretty emotionally fragile right now with everything that is going on, so we both lost it when we heard the news.  There were plenty of tears and I started understanding how people can "go postal", because I just had such rage that I felt like shooting people.  Don't worry - nothing happened because I have no guns, and I have calmed down now, so I am safe to be around.

Socrates was 16 years old, and he has been with us through thick and thin, so his passing has left an empty place in our house and in our lives.  He will be cremated and we are going to have a memorial service for him next week when we get the ashes.  Ugh - all I can say is I am ready for something good to happen.

This weekend we did get a little relief from George's treatments.  The session on Saturday was only two hours, and they gave us Sunday off because George is doing so well.  Kyle came over to "babysit" George on Saturday, and I was able to get out on a bike ride, which felt wonderful   He came over again this morning so I could go to yoga class.  This was very therapeutic for me - I have become very stiff from sitting so much at the hospital, and I think also from the stress of what we are going through, so the yoga class helped quite a bit.

Tomorrow is Day Zero - George's new "birthday" when he gets his stem cells back.   It will take 2 six-hour days to give him back all the stem cells, so we will be back hanging out at our little room at the blood center.    We have to get there by 7:30, so I guess I'd better stop blogging and get to sleep.

Saturday, March 26, 2011

Baldness and the fluid dynamics of showering

Isn't one of the best feelings in the morning the luxury of having a nice stream of hot water flow over your head and down your back and shoulders? I say yes! And since you don't have the privs to post original messages to the blog, my vote counts for a lot :)

Over the last couple of months since I've had the PICC and CVC lines it's been hard to do that. I have some various wraps to keep the lines dry but I've been trying to avoid getting the right side of my chest and arm wet so I've missed that nice morning soak. Adding insult to injury, as I really started to get bald about 6 weeks ago  the top of my head started to get cold in the shower. The warm water would hit my shoulders, splash up over my head and I'd feel cold drops on my head. This was surprising to me - you'd think that a spray that's only in the air for a second and travels only about 10-12 inches wouldn't cool down much. But with the wonder of both conductive and convective heat transfer at work, the water cooled down enough to feel cool on my scalp.

But - and here is the big insight to this morning's geeky post - when I took my shower this morning my head felt warm! I found this very intriguing. I believe this is because I have grown a bit of peach fuzz on my head:

I'm postulating that the droplets are disturbed as they hit the peach fuzz on my head and induce laminar flow across my noggin. This smooth flow of water with even temperature reduces the overall effect of conductive and convective heat transfer that is induced when my skin gets wet. So just this small disturbance in the surface structure of my head is enough to change the surface temperature so that my nerves are telling me - "hey, this is nice and warm" as opposed to two weeks ago, when my neural net was saying: "wow, this sucks. We're getting cold drops of water on our head."

I think this is one of the great, cool things about science. Qualitative analysis and quantitative measurements together often lead to new insights. I would never have thought that there could be this much of a difference from just a tiny change in my scalp surface. But I have at least one data point that says that this is definitely so. I admit the statistical universe is very small and I will work to repeat the experiment over the next few days. And when this last blast of chemo courses through me I'll probably re-lose my peach fuzz so I can then recheck my previous experience of getting cold drops of water on my head.

So there you have it! Perhaps a pretty lame analysis but I thought it was pretty good to have these thoughts before 6:30 on a Saturday morning!!!

Friday, March 25, 2011

my newest set of chemo mgmt toys

Tonight I showed the k-man my newest set of toys to deal with the difficulty of sitting down at the cancer clinic all day for 5 days in a row. It's been a bit of a slog! So at home, I've got the mag-fluid trainer setup in front of my biggish monitor in the study. Here it is setup for a ride before I climb on for a bit of a spin while watching The Blues Brothers movie. Nice music and a classic comedy:

I've got the Garmin 705 with heart monitor on the bike so I can keep my heart rate pretty mellow (< 120 beats/minute). Remote control for the Bose speakers so I can control the volume. Resistance cable strapped to the handlebar to change the resistance to the point that I get nice, smooth spinning across a reasonable set of gears. To the lower right, you can see the trusty guitar I use to play bad Johnny Cash renditions. If you're really lucky, Susan and I may make a duet of us singing something like Ring of Fire and post it for your edification :)

So it's nice to know that even if I'm strapped to a chair all day getting poisons injected into me that I can still get on the bike at the end of the day! Definitely makes a difference in how I feel and how I'm sleeping at night.

Well, tomorrow is day -2. So far, so good. One more day of chemo, a day of rest and then we start the steep climb of getting my stem cells back and getting through a week or two of worry about infection and some more fatigue.


Thursday, March 24, 2011

Transplant day - 4 (aka Thursday)

Hey, all. In the stem cell transplant world, all days are measured +/- your transplant day. My day is scheduled for next Monday the 28th and is called day 0. So today was -4. It was a day like other days today - getting poisons pumped into my body, trying to take a dump, writing some code - same old, same old...

I had kind of a bleh night last night. Five doses of chemo in three days kind of caught up with me and I spent the night with some mild GI discomfort and also some hot flashes. Took my temperature and it was  normal and I did get about six hours of sleep so it wasn't too horrible but still not great. My big concern with getting a temperature is that it might be a sign that I'm getting some more lung problems from another one of the chemo drugs. So I was happy to see that although I felt a bit flu-like I didn't have a temperature.

At the infusion center today we met the head doctor in the practice who I knew was a big bike guy. We are also both 1958s so we got along well right out of the gate. He's coming off a hip replacement surgery and is inside working on his bike trainer and plans to get back onto the road in April. We chatted a bit about Paris-Roubaix and then got down to the business of how I"m doing. Basically, this week has been unremarkable. And that's a good thing. My counts are all pretty reasonable; they'll start to tank early next week as the chemo really works its magic and that is by design. He's a very positive, direct, take charge kind of guy which resonated well with both Susan and I. After that consult, I got hooked up to the sauce and Susan got out for a nice 90 minute walk around the hospital area, down towards Cheeseman Park. Susan used to live in this area of Denver and I think she's enjoyed getting to stomp around her old hangouts. We've had some long days cramped up in a private room in the infusion center and although it's been mildly tolerable for me since I just stick my head in some code for Susan it's been a strange combination of stressful (worried about me) and just boring. So I was happy to see her get out for a good walk this morning.

After I finished the morning session we ate an early lunch and went out for another walk. Initially we thought we might make it up to Louisville between morning and afternoon sessions but it seems like it's just a bit too far. We'd probably spend 50% of our free time just sitting in the car which wouldn't do either of us any good. So we've been walking, eating lunch just hanging out in that area of town between sessions.

Today for our lunch stroll we headed over towards the Museum of Science and Technology. There are some nice views of Denver from City Park:

After this picture we decided to do some light hill repeats up a small hill (small, like 15 yards and about 10 feet of vertical). It doesn't sound like much but when you've been sitting on your ass all morning doing nothing those little jogs uphill really felt good..

On the east side of this lake is the bandstand which is, I guess, where bands stand when playing (?):

and the main building where you can, uh, do main building kinds of things. I guess I wasn't paying a lot of attention on this part of the walk:

At the end of this walk, we cruised by the hospital (a couple of blocks from the infusion clinic we're using) to get a bit of an afternoon snack. At this point my counts are OK but we decided that we should really start practicing very strict anti-infection behaviors. It takes a bit of practice to remember to do these things since I've historically been pretty much an  anti-clean freak. So here are a few tests for you:

You're in the lobby of the hospital, see a newspaper and start to pick it up. Good or bad idea?

Bad. Who knows if some little kid just sneezed all over it or not. You go to pay for your lunch with your debit card. Should you? No. You're about to trade skin bugs with someone that's been handling money all day and has traded skin bugs with a bunch of other people before you. Better let your handy wing-woman buy you a snack.

Ok, so you sit down in the lobby to get some time out of the infusion room and see lots of kids moving through the lobby, probably visiting family members since lots of schools are out this week. Should you stay in the lobby? No. Basically you should always run away from places with crowds or kids when your counts are low. So you cruise back to the infusion clinic and take the elevator. Next challenge - should you touch the button to call the elevator?

Hell, no! Who knows what bugs are sitting on that button ready to jump onto your fingers and then crawl inside of you the next time you touch your eye, your nose, your ears, cough into your hand, etc. It's a nightmare out there! So you use your jacket sleeve to shield your hand and then get in the elevator. What awaits? More buttons!!! It's a crazy, scary world when you have no immune system. So you again call on your awesome assistant. But what happens if she touches it and then touches you? (I like it when she touches me so this is not a behavior I want to discourage). For this situation, give it the old BMT (Bone Marrow Transplant) handshake and use your elbow to push the button, like this:

And finally, don't even get me started about the scariness of hitting the bathroom in a public place. Which, when you're getting a few quarts of electrolytes into your system as part of the chemo process is something you do. A lot.

So that's the whirlwind tour of getting ready to be without an immune system. Now's the time to really get serious about this stuff to avoid problems in the next couple of weeks. Some rules I will be working to live by:
  • Be really careful about what you touch
  • Don't touch your fingers directly to your nose, eyes or ears (this is why Mr. Kleenex is your friend).
  • New bath towel (including washcloth) every day
  • Rinse mouth 4x/day with salt/baking soda combination to reduce mouth sores from chemo and make your mouth a healthy, happy place.
  • Brush teeth 2x/day minimum but don't floss
  • Don't eat out
  • Don't hang out in crowds
  • Don't eat  a whole bunch of food that can carry bacteria or molds into you. Since we're mostly vegan we already get to cross a bunch of these off with no effort. But some are tricky - for example, no salad from public salad bars.
When I got home I threw the Blues Brothers DVD onto the laptop and did a light spin on the wind trainer for about 25 minutes while Susan whipped up a simple dinner of mashed potatoes, salad and a chicken tender like substitute we've grown to like that's made from soy and wheat protein. Yum!

As a final nice way to finish the day, we did some music therapy tonight. Singing and playing guitars and pianos. I hadn't played my guitar in several months so it was a pretty ugly session but we both really enjoyed the power of the music.

So that's it for day -4. Tomorrow is another long day, Saturday is short, Sunday is just a quick check-up and then Monday is blastoff day when I get my stem cells back. Hooray!

Wednesday, March 23, 2011

This Ain't L-Town (by Susan)

George and I have been spending our days at the Colorado Blood Center Institute, which is in downtown Denver. I lived on Capitol Hill when I first moved to Denver, and lived in Denver and Aurora for many years before moving to Louisville in Boulder County.  Now when I spend any time in Denver, I feel like someone from the boonies - complaining about traffic, the one-way streets, crazy driving, etc., etc., etc.  We have been getting breaks in our long days, and I have taken some walks around City Park, which is just a few blocks away.   There are homeless people who hang out there, which you never see  in Louisville.  There is definitely a different vibe in the restaurants and cafes - just many more different kinds of people than just your nice suburban working out and biking crowd that we always see around our house.  I am enjoying it, but I still don't think I would go walking in City Park after dark by myself. 

George is doing great with his chemo so far.  After day three, he has experienced very little nausea, perhaps due to the large doses of anti-nausea drugs he is getting every day.  One of the anti-nausea drugs is a steroid, so this makes him a bit hyper.  We come home and George is raring to go and I am the one who is collapsing on the couch.    I was feeling so exhausted on Monday and Tuesday nights, but finally today I perked up a little and I think it was because I had a visit from my good friend Kris and we took a walk arount the park together, and also had some great, supportive phone conversations with my sister Celia and also our son Ross, who is sending good wishes from the Netherlands. 

I attended a Caregiver Support Group meeting at Presby St. Luke's yesterday, and it made me realize that even in something as grueling as the treatment we are going through, some people have it worse than we do.  I talked to a few women who are here from out of state, so they have to take up residence in a motel or apartment for three months while their husbands are getting bone marrow transplants.  Often there are other family members there as well, like in-laws, sisters, brothers, etc., and having these people in close quarters can contribute to family tensions.    I feel very lucky that we live so close to the blood cancer center in Denver, with all of the expertise they have to offer, and that we can drive home to our own house and just relax every night. 

George is achieving  new zen-like levels with his chemo as demonstrated by the following picture of him doing yoga while connected to the infusion pump:

That's a pretty good Warrior III - better than I can do under the best of circumstances!  This picture was taken when we were doing laps with the infusion pole because George was too antsy to sit in his chair any more.  They have a nice infusion room with multiple chairs in it that is nice and sunny.  However, we have been spending most of our time in a private room where they put the transplant patients. 

We still don't know what the verdict is on Socrates.  They are keeping him in the animal hospital another night and day, and tomorrow we should know whether he will have to go on insulin or not.   I am feeling very bad that I have no time to take care of my little friend right now.  We are hoping that the new food will help enough so that we can get him home this weekend, but if he needs insulin then we may have to keep him in the animal hospital through the transplant process while George's counts are really low. 

Tomorrow is another long day at the infusion center.  As George said, we're beginning to feel like we work there!

Wed morning. More boring chemo (but boring is good)

Morning, all. Another day at work today, where work = getting chemotherapy. Yesterday was a pretty uneventful day. Sitting around in the morning getting some chemo, then off to a nice lunch at a nearby restaurant, Watercourse Food. Highly recommended, wide selection of tasty veggie meals, wide mix of teas, just all around good stuff. We got home about 5:15. I took a nap and then jumped on the trainer for a brief spin. We then had a nice pre-made dinner from Organic Dish, where ourfantastic friends at Flatirons have put in a hefty food budget. We go on the web, order a few meals a week and then pick them up and store them in the freezer. Thaw 'em out for a bit, cook 'em up (usually a 1 pot meal) and you've got a great, veggie/vegan meal with very little effort. Definitely a nice perk that I think we'll use a lot of over the next week or two as we spend time down here in Denver during the day.

Also had a pretty good night last night. I've got my bike trainer setup in front of my laptop with a big monitor so I can watch movies in the study without monopolizing the TV in the family room. Based on recommendations from BikesOrBeers buddies, I got the Kurt Kinetic  T-004. We cashed in some REI dividends and also managed to use a 20% in-store discount so got it for a pretty good deal. When we unpacked the box it was missing a spring, so a quick call to the Kinetic help line and the spring is on its way. Right now my platelets and WBCs are pretty good so I could definitely still do outside rides but the days down here are pretty long so by the time I get home, a few minutes spinning on the trainer seems like just the ticket. And early next week my counts will go down a lot and then I'll definitely be sidelined for a while onto the trainer. I can already see that a trainer tire is a good idea. I got one but haven't put it on yet but will soon since after only a few miles I can see that back tire is getting worn.

By the end of yesterday here at the infusion center I was getting pretty antsy, so we did a few laps of the infusion center with my infusion unit in tow. Found a bigger room and did a few yoga poses while hooked up the infusion pole. Susan's got some photos of that silliness she'll post later.

Well, that's it for now. Just doing the work of beating down my immune system so I can get rid of the last of the nasty cells hanging in my lymphatic system.

Oh, and quick update on my co-blogger. Socrates spent the time at the vet hospital last night. Antibiotics are in, lots of rehydration going on and they've started him on a prescription cat food. We're hopeful that the cat food will get his blood sugar under control and we won't have to start him on insulin. It was a weird feeling last night to not have him in the house. With only the 3 of us in the house he's definitely a key part of the home posse. If things go well today for the little guy we'll get him home tonight. He was starting to nip at people yesterday at the vet which makes us hopeful that he's getting some of his mojo back.


Monday, March 21, 2011

BCNU in the books, and a visit by Ifni

We finished up the first session of chemo today (BCNU) with no problems. A fairly long day at the clinic (in at 9:05, out at 4:50). As a job, those aren't bad hours but if you think of it as a doctor's visit, it's pretty grinding. I walked around a few times with my friendly infusion pole and changed seats through the day. Susan went out and got us nice veggie bagel sandwiches for lunch and she escaped for a walk in City Park (where she encountered some "interesting" folk. Look for a blog post on that experience...)

So the day was very successful from a chemo perspective. So to mix it up a bit,  here comes Ifni. I refer to the fictional goddess that David Brin describes in one of my favorite sci-fi space operas, The Uplift Novels. Here's a quote from a genetically modified dolphin that's a space pilot (I did mention that it was scifi, yes?):

'It might seem presumptuous to invoke the goddess of chance and destiny, capricious Ifni, who always seemed ready to plague Streaker's company with one more surprise. Another unexpected calamity, or miraculous escape. But Kaa had always felt an affinity with the informal patron deity of spacers. There might he better pilots than himself in the Terragens Survey Service, but none with a deeper respect for fortuity."

So our little present from Ifni today was that our cat Socrates was diagnosed with feline diabetes. He's been listless the last few days, has lost some weight and has been peeing in non designated areas in the house. And just about the worst time for it, given how immune system challenged I will be next week and considering all the hard work we've done over the last few weeks to get the house ready. Kyle took him into the vet this morning and we got the diagnose this afternoon. It's usually a very treatable ailment and we'll find out over the next couple of weeks how we'll keep his blood sugar regulated. The kidney panel they did suggests that his kidneys are ok so we're hoping he doesn't have any other issues related to the diabetes. We may be able to control this with a change in diet or we may end up giving him subcutaneous insulin injections. And I can imagine how psyched he's going to be when he starts getting those shots...
So when I heard the news, I just thought: "You have GOT to be kidding me." So somebody, somewhere has quite the twisted sense of humor. Ifni, the Cosmic Jester, Loki. Somebody, something, pick the name from your culture of choice. Nothing terrible and fatal. Just a little medical zinger. Kind of like a karmic bee sting or skunking. And then my next thought was "WTF!!!" I mean, I know somebody would find this ironic and funny in a twisted way but certainly none of us in the Socrates fan club. So now we've got another patient in the family. We'll muddle through it but at some point you just have to shake your head and wonder why the universe is such a twisted little place. Can't we just have a couple of months of peace and quiet to get my health under control? Looks like the early answer may be no.

Soc is going back in to the vet hospital tomorrow to get some antibiotics for a bladder infection he's picked up as a side effect of the diabetes. We'll get that under control and then work out a plan of action. So although he frequently sits under my desk when I'm blogging, he's not so good at typing so it looks like I'll be blogging for two for a little while.

ttfn. Off to put my new bike trainer together and then to bed. We're on the job at 07:30 in the morning for Etoposide. 

Susan : 1, Blinds: 0

Late breaking news from the blood clinic. We had a feisty blind in our room that refused to lower itself. The afternoon sun was getting a bit bright so Susan decided to teach the blind what-for. With a thundering crash, the blind surrendered to Susan's indomitable will. Here's a picture of the victor with the vanquished blind:

Other than that bit of excitement, not much going on here. Getting the "B" in the BEAM protocol. Should be home by about 5:00 pm and then back tomorrow for E and A chemicals. More news as it happens!

Collection done: hey, I'm leaking: man tears at work: the big game starts today!

Well, it's been a busy few days and I wanted to update you on how things are going.

On Thursday we completed the stem cell collection process. I have 2.36 million of my stem cells frozen and waiting for me in Denver. One thing I didn't realize until Thursday was the blood volumes involved in the process. They were processing 110 ml/minute through me for five hours. That works out 60*110*5 = 33 liters of blood. Assume roughly 6 liters/blood volume for an adult male and that equals getting my entire blood volume pumped through the machine about 5 1/2 times. Crazy! Another little tidbit - they preheat the blood before they give it back to you so they're not pumping room temperature fluid back into your heart. A very nice touch - without the preheat you could imagine that this might be a pretty good mechanism for getting hypothermic pretty quickly. At the end of the day my platelets were down to 11 which is pretty close to when you need a platelet transfusion. So the infusion nurses sent me home with instructions to be careful about brushing my teeth, not cut myself, etc. as my clotting function would be pretty bad.

On Thursday evening we thought to go out to eat to celebrate the completion of the collection process. I took a nap while Susan went out for a run. As I got up from my nap, I felt like I was sweating on my chest. Lifted up my shirt and - nope - not sweating. Blood oozing out of the catheter in my chest, pooling under the bandage and then leaking down my chest. Yikes! Welcome, instant hemophilia! Although the total blood that leaked out was probably only a couple of CCs, it was kind of freaky. We called the doc on call and he suggested putting pressure - lots of pressure - on the incision site to help. So we spent a couple of hours thinking up interesting ways to apply cold and pressure to my chest. Watching TV with Susan's head lying on my chest, applying pressure with my hands, lying on the bed with some heavy books on my bandage. Nothing like a little mechanical problem to bring out the creative problem solving skills of an engineer! I woke up a couple of times in the middle of the night - am I leaking? Blood flowing out of my chest? Nope, those little platelets were happily growing over night and in the morning I am Clotting Boy. I head over to my oncologist in Boulder and they change the dressing and I'm back in business. I've posted a graphic picture of the bloody mess at the end of this post if you want the whole visual effect...

A busy Friday tying up loose ends and then we have our every-once-in-awhile Friday Beer Thirty happy hour at work. On Friday, though, some inspired coworkers (thx Dave for organizing!) have gathered together a bunch of gifts to help me with my time off. Some nice beanie hats to keep my bald noggin warm, a few gag fits, a couple of puzzles and a shiny, brand new iPad2. At this point I'm getting pretty embarrassed by the whole thing and decide to give people a quick summary of what the next six weeks hold for me. Things go pretty well until I start talking about how much I care about the company and the people. And, uh-oh, here come the man tears. I go into uber-geek mode and look at my shoes for a few seconds to try to collect myself. I suspect that there were some other damp eyes in the room as well but I was too busy looking at the carpet while I tried to collect myself.

The rest of the weekend is spent getting final logistics set for the chemo/transplant process. I managed to get a nice little bike ride in on Saturday. 3 Teat Pete made an appearance on Morgul Bismarck:

It felt really good to get on the bike and enjoy the nice weather and do a tiny bit of hill work. Susan and I are planning on doing the Copper Triangle and we've both got a lot of work in front of us before we'll be ready for that day. Saturday night we had a nice time at dinner with Kyle and Emma at Zucca and then we dumped those light weights and headed over to the Waterloo for some pretty good blues. Downtown L-town on a  Saturday night - crazy times! I am also happy (?) to discover potentially the worst martini I've had to date - the Genoa. Some bad combination of gin, vermouth, and various Italian liquors. Not good. To be avoided...
Sunday we focused on final house details - laying in lots of healthy food, final cleaning tasks, getting a run in, etc. I managed to catch up with Caitlyn on a video skype session - it's amazing how the video aspect makes the emotional connection so much stronger than a phone call. Over dinner  I was remembering the night before my mother's surgery when she had breast cancer and how scared I was by that as it was the first time I was really confronted with the mortality of someone I really cared about. Susan and I had a powerful conversation about dealing with the hard times in life and I was again struck by how lucky I am to have such an awesome partner to help me through this. Every once in a while over the last year I've thanked Susan and told her I was sorry that I was doing this to her. But at some point you realize that these comments don't mean too much. When you have a soul mate in your life, this is just what you do. You can't imagine not being there for the person and going through it with them. We thought back through the years we've known each other and all the hard things - divorces, deaths of family members, cancer. But really, there have been so, so many good times. Our beautiful four children, weddings, graduations, great travel, the million soccer, baseball, football and lacrosse games, all the great musicals and plays our children have given us. So this current period is probably going to be pretty hard but we'll get through it together. As always!

I thought I would have a really hard time sleeping last night due to pre-game jitters but it wasn't too bad. Woke up a few times but managed to get a pretty good night's sleep. I think the big talk over dinner cleared my head and put me in a good mental state. I feel healthy, we've done all our due diligence to get the house ready for this next couple of weeks.

So now we're here at the CBCI  clinic getting loaded with electrolytes in preparation for the first dose of chemo that'll start in an hour or so. Because I'll be a bubble boy during the process (neutropenic) I've got my own room. We've got iPads, laptops, smart phones to keep us busy as I suspect that we'll be doing a bunch of sitting around over the next week while my body gets lots of nasty chemicals and also lots of supporting fluids and such. Here's a picture of Susan checking out a Portlandia session on the iPad:
Well, that's about it for now. More blogging as the mood strikes.

And as promised, if you're interested in the picture of my chest after the little leaking episode on Thursday evening, scroll down to see the results of that little incident.


Thursday, March 17, 2011

my ticket to high speed bike descents; and I won the no-pee contest

Back at PSL this morning for more blood collection fun. I learned yesterday that the centrifuge process that is used to isolate your stem cells separates platelets very close to the area from which they collect the stem cells. So in this process, as a side effect of collecting stem cells they also collect platelets. My platelet count has gone from 174 (normal is 150-400) down to 16 over 2 days. If the count goes below 10 today they'll give me a bag of platelets. Platelets are the little guys that help your blod clot and running around with a low platelet count is a recipe for trouble if you have any physical trauma (falling off your bike, getting in a car accident, etc.)

To get me ready for the possible reception of platelets, I've been given a blood id tag for PSL. This makes it logistically easier for me to get blood - they've already typed and cross-matched my blood, etc.

So ok - why does this give me permission for high speed bike descents? Well, if I crash on my bike and need any blood products, I've already got my ID:
Ok, maybe this isn't the best logic in the world, but I'm always looking for a little edge on the bike!

And speaking of stupid ways of being competitive. For the last two days I was sitting next to a guy in his early 60s that's going through the same process as I am. We had an interesting conversation yesterday about his stint in Vietnam. Anyway, on both days he had to pee during the middle of his 5 hour session in the chair and I did not. So hah! My blood chemistry may be f__ked up but it looks like my bladder and prostrate are kicking some serious ass. In the old guy geezer sweepstakes being able to go 5 hours without peeing is a sign of a real champion. Or perhaps I'm just really dehydrated. 

Well, that's it for now. Most likely this will be my last day of collection. The stem cell count is still kind of low but at some point it's a case of diminishing returns. If my stem cell collection is lower than the target it may cause me to be a day or two slower to engraft my cells back into my bone marrow. But I had a good chat with the physician this morning and we won't go forward with the chemo next week until we're super confident that the stem cell transplant will be successful. I was worried about this last night lying in bed but after the conversation this morning  I'm comfortable that we're in good shape on that front.

Wednesday, March 16, 2011

Another day in the big chair

Morning, all! I'm back at PSL this morning for another 6 hours of fun getting my blood processed.  Not much different from yesterday so to keep you interested, here are a few interesting tidbits:
  • CD34 presence in your blood is a good indicator of how many stem cells will get harvested. For those of you interested in such things (that means you, Josh and Sarah!) you can follow the link. For the rest of us, this is a molecule that they look for when they sample my blood in the morning and gives a general indicator of how many stem cells will be in the white blood cells they collect. Yesterday we harvested 1.3 million stem cells. The goal for someone my size is 4-5 million so based on how things go today, I may be done or may have to come in tomorrow. I don't have my CD34 count back from this morning yet - I'll post a note when I have that.
  • My WBCs are up from yesterday. Yesterday I was at 52.8, today I'm at 55.4 (normal is 4.5-11). So I've got a lot of WBCs being made which is a good thing.
  • I'm really starting to dislike Mozobil. It's a drug that releases stem cells from your bone marrow but it's pretty nasty on your GI tract. I had a fairly unpleasant evening with cramps and such. Hopefully I won't have to take this again tonight. Anything to get a good stem cell harvesting but it would be nice to avoid having to go through that again. 
  • Neupogen - another drug I'm growing to dislike. It stimulates WBCs (hence my 8x normal amount of white blood cells) which is a good thing. But it also makes you feel like you have the flu. Hot flashes, achy, stuffy sinuses. Uggh. Or maybe I'm just going through male menopause? 
  • It's nice to have a job where your work location isn't all that important. Yesterday I had a pretty productive day - attended meetings, did a little coding, kept up with e-mail, etc. Ping times are < 60 ms so network access is pretty snappy.
Well, nine-sies are here (2nd breakfast, lame Hobbit reference) so I'll wrap this post up and dig into my bagel, apple sauce and orange juice. Hope you all have a good day and are getting properly geared up for a day of green beer tomorrow!

Tuesday, March 15, 2011

cobe borg lives!

Here I am at the infusion center, being a happy little Borg. Specifically, I am hooked up to a Cobe Spectra, which is now my BFF of the stem cell transplant world:
The bag on the upper right contains my happy little white blood cells, which will be frozen and given back to me. But no! You want more of a close up of the whole vampire operation? Ask, and you shall receive:
My finger is pointing at the line going out of me. The other line is going back into me (minus some WBCs). The whole thing is really quite amazing. It's quite a specialized hotel here - I have access to room service, which I have already used to get a mid-morning snack (english muffin and fruit). Wireless access is good and Susan and I are both happily typing away at our keyboards as I type this:

The only issue is that you are connected to this machine for five hours. And if you have to go to the BR during this process? Well, you're peeing in a bottle. So, the key is to pee before you start, and minimize your fluid intake and hope for the best! I guess it's a good test of your prostate health to see if you can make it five hours without having to take care of business. We'll see how that goes!

Ok, that's it for now. I'm not sure if we'll get all the cells we need today (5 million) or if I'll need to come back tomorrow. The lab will look at the blood collected today and decide later this afternoon if I need another day of collection.  Much as I enjoy sitting here in my Borg alcove it would be nice to get this done in one day. Again, we're in wait and see mode. A big part of getting through this process is being flexible and not getting freaked out when schedules change. So we'll finish today about 1:30, go home and recharge and see where things from there. More news as it happens!

Monday, March 14, 2011

Welcome Harry the Hickman catheter

Today we welcome a new member to our cancer fighting family. Meet Harry the Hickman catheter:

He's got three lumens to facilitate the apheresis process I'll start tomorrow. The larger internal diameter of a 3 lumen catheter helps facilitate blood flow in and out of me (and since it's going in and out at the same time, I need at least two lumens). The Cobe Spectra machine - which strangely enough Susan helped develop 15 years ago - applies quite a high pressure in the line when extracting and injecting blood. So although I now feel like a cow with multiple teats, I am ready for white blood cell harvesting in the morning.

The catheter placement went very smoothly. A bit of Versed and Fentanyl ( my new favorite cocktail - highly recommended!), some local anesthetic and I've now got another Borg implant. After the procedure Susan and I got out for a nice walk around City Park to help work the meds out of my system. It was a beautiful afternoon in Denver today and it was really nice to walk around the park and see various kids' teams practicing Frisbee and lacrosse.

At the end of the afternoon I dropped back into the infusion center for a shot of Mozobil which tells all my wildly  producing white blood cells that it s time to come out of my bone marrow and party! These little guys are then in for a surprise - they will get vacuumed up by the Cobe Spectra machine, then frozen, then re-injected into me. Hah!

So tomorrow at 7:00 am I start my collection process. These are the fellow that will save my life - will be given back to me after I get blasted with chemo. The dual effect of getting frozen and then having to migrate back to my bone marrow are both things that those wimpy cancer cells can't do so I will (in theory) get a new and healthy immune system after all these shenanigans are completed in a couple of weeks.

More news tomorrow! I will post a picture of the mighty Cobe Spectra as it does its vampire thing on my blood.

Thx for all the help this weekend!

In preparation for me becoming bubble boy, we had a busy weekend. Our friends came through big time for us and made it a super productive and fun time.

On Saturday, I managed to get a nice ride in with some new friends I've made through the Denver Livestrong community. 20 miles up and down Lookout Mtn. 2100 vertical feet of climbing. Every week I've been getting a little stronger on the bike so it was nice to be able to climb a bit and not feel completely wiped out. Thx to Bunny, Brian, Steve, Josh and Sarah for a nice day on the bike.

On Sunday, we put the hammer down on getting the casa ready for the next few weeks of ultra clean living. Carlin, Scott, Carolyn and I tackled some outdoor tasks - cleaning the garage, raking leaves, etc. Inside, Susan, Chris G., Chris J. and Gen did some mondo clean and sanitizing and reorganizing our house to make it a clean environment for me as I regrow an immune system.

Just a few pics to give you a sense of the work these guys did:

Our spice cupboard. Trust me, it didn't look like this before the cleaning crew did their magic:
And if you look closely, you'll see that their alphabetized!

Plants can have some bugs on them, so the plan is to put these all in one room and I'll generally stay out of that room:

If you're like us, you've probably also got some crazy science experiments going on in the door of your refrigerator. Condiments from the 1990s, etc. These long term agar plates masquerading as food can bring some nasty bugs into your life so they've gotta go! Here is the door to our frig now:

So in summary, thx SO MUCH! to all youse guys for all the hard work. We accomplished in one day what would have taken us a week to do on our own. I felt pretty worn out by last night but after a good sleep I'm charged up and ready to dive into a week of treatments.

I think that blog frequency will shoot up as we start to have lots going on with my treatment. Look for more posts this week as we dive into the fun and adventure that is the Geo Science Experiment!!!

Sunday, March 6, 2011

Counting Down to Transplant (by Susan)

George and I have just two weeks until he begins his BEAM chemo and then the stem cell transplant.  The agenda for the next two weeks is:
- Get a triple lumen port put in next week for the apheresis, the chemo, and any possible antibiotics that might be needed.
- Use apheresis (separating George's blood into its components using a centrifuging technique) to collect George's stem cells and then freeze them.
- Give George the BEAM chemo for 6 days starting on March 21st to eradicate all cancer cells in his body, which will also wipe out his bone marrow and his white blood cells.
- Stem cell transplant, giving him back his own stem cells, on March 28th so that he can re-grow his new blood.  This will be his "new birthday" when he gets all-new, healthy blood. 
- Wait about 12 days until the cells are "engrafted" - this means they have migrated back into his bone marrow and start producing new blood cells, particularly white blood cells.   During this time we will be going to the blood center every day to get his blood counts taken. 

We went to a training class last week at Presbyterian St. Luke's Hospital and got a thick instruction manual on how to handle this whole process.  We will have to do a special cleaning of our house before he begins the BEAM chemo, because between March 21 and about April 15th he will have no immune system whatsoever, so he has to be extremely careful not to get exposed to any bacteria, viruses, molds, or fungus.   He will be basically quarantined in our house and not allowed any visitors due to the risk of exposure.    We have special cleaning instructions as well as special food preparation instructions and a list of foods he can and can't eat. 

I will be taking 5 weeks off work starting on March 21st to be his dedicated caregiver - driving him to the blood center every day, preparing meals, keeping everything sanitary, etc.  I also have to be there 24 x 7 in case George should spike a temperature or show any other signs of illness so I can rush him to the hospital.  It is quite a challenge but I feel I am ready. 

Many people have asked how they can help during this time, and I was told at the caregiver training to Ask For and ACCEPT help.  Since I am notorious about not accepting help, I am teaching myself to say yes to people who want to help.  I have posted a link on the top of this blog to our Helping Calendar.  This is hosted by a site called "" specically for cancer patients.  The calendar has events posted on it, and it you can go out there and look at them and sign up for any helping event where requested.    This calendar also shows what treatments George is getting on what days, so people can keep track.   I don't think there is anything out there right now where we do need help, but I will be posting things if we need rides, need meals, need snow shoveling, or logistical errands run.    If you want to , you can take a look at the calendar.  You should not need to log in to sign up for an activity - let us know if you have difficulty viewing it.
In the next two weeks we are trying to have some fun, because George will probably be feeling pretty tired during the transplant period and will not be able to go out or be in any kinds of crowds.  We have been skiing, biking, running, and going out to eat the last few days, enjoying these first few days where it feels like Spring.  

But when it comes down to it, we both feel like we're in the last two weeks of training for a Triathlon or maybe an Ironman competition.  I've got a laser focus on getting George better.   Let's get this thing done.  We are both ready to get going and to give this cancer HELL!