Morning, all. Down at the transplant center this morning and just finished having an interesting conversation with the team of doctors. As part of the transplant process I've signed up to be part of a clinical trial that looks at the cross compatibility of my progenitor stem cells to be genetically enhanced to act as a source of uber cells that could be used to help other patients. As everyone knows, Italian stem cells are incredibly robust and mine have been tempered down through the generations with a healthy cross-dose of other pan-Euro stem cells from my ancestors in Ireland, Scotland and Austria. Over the past week they've been evaluating my cells and have come to the conclusion that I have the best stem cells every seen in someone that's descended from European ancestors.
But here's the big catch - if they give my stem cells to other transplant patients, there will be side effects. Because of the strength of my stem cells, they will do some genetic remapping of the recipients. The most likely changes to the donor are a bigger nose, louder voice and a tendency to blurt out inappropriate comments at social gatherings. Also a creeping desire to wear socks with flip-flops.
So the big moral question I face is dare I unleash this on the population? Of course if it helps save peoples' lives it would seem like a reasonable trade-off but I think there are some subtle karmic questions here. Do we all have different paths to enlightenment and would I be corrupting someone's path by letting them get the uber Geo cells? This could be a Pandora's box - once my little guys start getting out into the greater population parties may never be the same. And the fashion implications are really too terrible to think about...
It's a tough decision that I've got to grapple with. Luckily this seems like the perfect day to think about these deep thoughts so thanks for allowing me to share my dilemma. Let me know what you think!
Friday, April 1, 2011
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:
http://www.huffingtonpost.com/dr-mercola/coconut-oil-benefits_b_821453.html
He seems to be able to tolerate drinking it, so maybe we can get some calories into that boy!
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:
http://www.huffingtonpost.com/dr-mercola/coconut-oil-benefits_b_821453.html
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.
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!
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!
Pre-party activities start with getting the warming bath going:
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:
Next, they give me this:
While the blood is warming up, get the plumbing prepped for the actual transfer operation:
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.
Boo-yah!
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.
Boo-yah!
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!
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!
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