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.
Yikes!
Monday, March 21, 2011
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.
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.
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!
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.
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!!!
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 "MyLifeLine.org" 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!
- 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 "MyLifeLine.org" 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!
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