Finally, progress on the Stem Cell front!
Received a letter from the City of Hope (COH) today with some appointments scheduled for me. Called them up, chatted with Jill L., the Nurse Coordinator from the Division of Hematology and Hemoatopoietic Cell Transplantaion (that took up half of her buisness card), and got some dates and info on my upcoming procedure.
First, I am gratefull that I passed all the tests and qualify to have this cutting edge procedure done so soon after my diagnosis. 147 days have passed, and I am on the slippery path to total health... I need to watch out.
Now the dull specifics.
13-August -- Classes at COH. New paitient information, consulting on the catheter, care and cleaning of the catheter. Also, how to inject myself with Nutropin. Joy.
21-August -- Chemo at Kaiser Lakeview. This is to jolt my system into making more stem cells. Yes, I will still have hair afterwards. This is baby chemo.
22-August -- "Pic Line" time. Get my catheter inserted. This is so I can hook up to the machines quickly to harvest my stem cells starting...
1-September --... daily at COH. I will be my own milk cow, being milked of my precious stem cells for my own sake. Drive up, hook up, chill out. Un hook, drive home, chill out. Just like a job, but with needles.
Once they get enough stem cells (at least 4 or 5? How big are they?) they will admit me to my own private suite at COH. Actually, it's only a VERY sterile room, but I can call it whatever I want! That will be either 12-September or 19-September.
Now you know my schedule. I will try to pack as much face time in between now and then with each and everyone of you, so be prepared!
More soon,
jc
Quake? Shut up and watch the movie!
Got to see my movie (a rare treat), and darn it, folks ruined it!
I guess there was a quake during the movie, yes I felt it, no I didn't care. I could tell it was close -- sharp P-wave with rumbling after wards. Did I get bothered, no.
Just like LA Story, I nudged Doc, said "what a 3.5 or so?"
"Possibly a 4..."
We returned to the movie. The family behind us was absolutely terrified. Honestly. I have never seen that. I told them to sit down, the worst is over, and they are in a VERY safe place.
They bolted.
Years of training has jaded me to the fact that sometimes these things do panic folks. It was just plain annoying being around amateurs.
So, we ended the movie with 5 people watching instead of 9. No loss. Had a great lunch at Brea's Best Burger, and came home. Not even a scratch to the house.
======================================================
Good news / Bad news
Good news: I no longer need to take the stupid steroids.
Bad News: Still only 4 hours of bad sleep this morning. No, they won't give me a pill for just one night. I may try beer...
jc
I guess there was a quake during the movie, yes I felt it, no I didn't care. I could tell it was close -- sharp P-wave with rumbling after wards. Did I get bothered, no.
Just like LA Story, I nudged Doc, said "what a 3.5 or so?"
"Possibly a 4..."
We returned to the movie. The family behind us was absolutely terrified. Honestly. I have never seen that. I told them to sit down, the worst is over, and they are in a VERY safe place.
They bolted.
Years of training has jaded me to the fact that sometimes these things do panic folks. It was just plain annoying being around amateurs.
So, we ended the movie with 5 people watching instead of 9. No loss. Had a great lunch at Brea's Best Burger, and came home. Not even a scratch to the house.
======================================================
Good news / Bad news
Good news: I no longer need to take the stupid steroids.
Bad News: Still only 4 hours of bad sleep this morning. No, they won't give me a pill for just one night. I may try beer...
jc
Update of the day
I feel like I should ues the "Daddy Big Voice" when I post that.
Had lunch with my BFFs Brian and Mark. Had a big lunch, gave the girl a $10, shoved the change in my pocket. Got home an had $12! Love that new math.
Had infusion in the Chemo lab today. They pump in a drug called Aredia, pretty mild stuff (compared to the other stuff they pump in people there), and I don't seem to have any side affects.
Nice.
I take my little non-ipod mp3 player and listen to all my songs. Usually I sleep, but the *#&$@ steroids were starting to kick in.
The girls were well taken care of by Grandma, and they were good girls. They went to the Arboretum, picked some tomatoes, and Caitlyn got bit by a chicken. It was payback for all the nuggets she has eaten in the past.
Tomorrow, I get to see a movie with my old professor, long time friend, and father of another BFF, DOC. I will let you know if the movie is OK or not.
Time for a sleeping pill, and cool down...
jc
Had lunch with my BFFs Brian and Mark. Had a big lunch, gave the girl a $10, shoved the change in my pocket. Got home an had $12! Love that new math.
Had infusion in the Chemo lab today. They pump in a drug called Aredia, pretty mild stuff (compared to the other stuff they pump in people there), and I don't seem to have any side affects.
Nice.
I take my little non-ipod mp3 player and listen to all my songs. Usually I sleep, but the *#&$@ steroids were starting to kick in.
The girls were well taken care of by Grandma, and they were good girls. They went to the Arboretum, picked some tomatoes, and Caitlyn got bit by a chicken. It was payback for all the nuggets she has eaten in the past.
Tomorrow, I get to see a movie with my old professor, long time friend, and father of another BFF, DOC. I will let you know if the movie is OK or not.
Time for a sleeping pill, and cool down...
jc
Recovery Day
Finished the last of my tests... for this week. The Creatine (sp?) involves 24 hours of urine collection and, yes more, blood tests. So yesterday I went to Kaiser and dropped off 2 jugs of my personal best, and they took 2 vials of blood. That's 24 this week. I have to go back Sunday or Monday for one more vial for my infusion appointment on Monday. My arms look like junkies.
To celebrate, I kidnapped the Schicklets and the Crumlets and went to Disney's California Adventure (DCA) for the afternoon. They had not seen the new Pixar parade, so we camped and waited for that one to go through. Big hit on that one: Jak Jak and his hair on fire! While waiting I sent Ashley over for fast passes to Soaring over California (late at 7:30, but we probably would still be there).
Next was the big event, Toy Story Mania. The 4D ride was a hit with all involved, and we all got keychain blasters for scoring our personal best! Nana and Papa met us in the gift shop and we went to diner at Pizza Oom Mow Mow.
Now, it has been one of my dad's life goals to actually eat one of those turkey legs off of one of those outdoor vending carts. Why? Perhaps it was something from his childhood that stuck with him, but he got one, and devoured it! Was it good? "I dunno, I ate it too fast!"
Clean up the kidlets, and off to Soaring over California. Boy, they like that. Jenna loves it when they check her height, and it shows that she is a big enough girl to go on. Afterwards, had just enough time for one quick ride before the electrical parade. What did they choose? Grizzly Rapids! I am not 100% ready for that one (soon, though) so it was an all kids adventure. Jenna actually made (barely) the height requirement, so it was her first time. They all got pretty soaked on this one, but had tons of fun!
By the time the Parade was done, everyone was BEAT. Jenna was carried out by Ashley (thanks Ash!) and we treked home. It's almost 9 and the Schicklets are still sleeping (Jenna gets up at dawn regardless).
So, today is rest and relaxation. Ahhhhhh...
jc
To be three and naked...
While encouraging Jenna to get dressed, I told her this:
"Hurry up, get your pants on, and we will get to work!"
"Wa wor?" (What's work?)
Oh, to be three and naked. Biggest worry? Being caught by dad and told to get dressed.
jc
"Hurry up, get your pants on, and we will get to work!"
"Wa wor?" (What's work?)
Oh, to be three and naked. Biggest worry? Being caught by dad and told to get dressed.
jc
Today so far...
When Kaiser gets things rolling, they roll.
The road to transplant is filled with tests. And needles.
Had 17 X-rays done today (chest and body survey) at the Lakeview facility.
While waiting, I made the appointment for my pulmonary test, got it at 4:45. A bit late, but it worked. While leaving X-ray, they called and asked if I could go up right away, so >BAM<, there I am huffing an puffing into a Rube Goldberg machine. It seems that they just can't go a day without poking me for blood, this time to check my blood gas levels. I knew I had gas, but in the blood? Now I have a good excuse!
Now, after a healthy lunch of hot dogs and Caitlyn's lemonade, I am off to physical therapy.
If they whip out a needle, I am so out of there...
jc
The road to transplant is filled with tests. And needles.
Had 17 X-rays done today (chest and body survey) at the Lakeview facility.
While waiting, I made the appointment for my pulmonary test, got it at 4:45. A bit late, but it worked. While leaving X-ray, they called and asked if I could go up right away, so >BAM<, there I am huffing an puffing into a Rube Goldberg machine. It seems that they just can't go a day without poking me for blood, this time to check my blood gas levels. I knew I had gas, but in the blood? Now I have a good excuse!
Now, after a healthy lunch of hot dogs and Caitlyn's lemonade, I am off to physical therapy.
If they whip out a needle, I am so out of there...
jc
Cancer update II
Just got back from my appointment, had the bone marrow biopsy.
Ouch.
Gave 22 vials of blood.
No ouch. The lady is a real pro. Had to sit for a while, thinking of having a good beer.
Had EKG.
No ouch, done in 2 (maybe 3) minutes. Great guy doing it too.
Tired, may take a nap. Steroids wearing off now.
jc
Ouch.
Gave 22 vials of blood.
No ouch. The lady is a real pro. Had to sit for a while, thinking of having a good beer.
Had EKG.
No ouch, done in 2 (maybe 3) minutes. Great guy doing it too.
Tired, may take a nap. Steroids wearing off now.
jc
I (heart) sterroids
Ahhh, here it is, lovely 05:00 and I am typing away. Yes, I took my sleeping pill at 9:00 last night, went to bed at almost 11. Didn't seep much. I do need to get going early today, but not for another 2 hours.
This is going to be a messed up day.
By the way, I am a huge fan of Skype. When I am at home my screen name is (get ready) jamescrum, all one word. I have another one, when I am in the hospital using mom's laptop, jim.the.ill, but it is used ONLY when I am in the hospital. I'll let you know when it's OK to call me on that. I have video on both, but you don't need it-- just a microphone and you will be good to go.
jc
This is going to be a messed up day.
By the way, I am a huge fan of Skype. When I am at home my screen name is (get ready) jamescrum, all one word. I have another one, when I am in the hospital using mom's laptop, jim.the.ill, but it is used ONLY when I am in the hospital. I'll let you know when it's OK to call me on that. I have video on both, but you don't need it-- just a microphone and you will be good to go.
jc
Cancer update
Have not even put in the blog what the cancer is. Multiple myeloma , the third (rarest) form. Can't remember the technical word for it, I have an appointment tomorrow, and will get the official term (so you can be informed if you want).
Anyway, I will post the history of how I got here later. Here is what is happening now.
I have been deemed a prime candidate for Autologous stem cell transplantation at the City of Hope up in Duarte. It seems simple. They suck out MY stem cells, store them on a shelf somewhere (hopefully not by the diet Coke), zap the cancer cells with a chemo a-bomb, sweep up my hair, give me back the stem cells to regrow my bone marrow, and I am all (mostly) better.
But, alas, it seems that there are "procedures" and strange oath to "do no harm", so I have to get tested, poked, prodded, plumbed, folded, spindled and mutilated (chrome dome). Sigh, my dream of being the first male supermodel is crushed.
The testing starts tomorrow. After I meet my Hematology Oncologist, I get an x-ray of my whole body, my chest (I guess its a different x-ray beam they use), EKG, 24 hours of urine (two buckets, please!), and everyone's favorite -- a bone marrow biopsy.
I had a bone marrow biopsy when I was in the hospital. They give you a local anesthesia in your butt cheek. Then comes the big needle. It looks like a spare coffee stir stick from the cafeteria. It has to be big and strong because when they jam it in you they have to break through your hip bone. Can't deflect right, can't deflect left, straight in -- and through. Local anesthesia doesn't go very deep. Breaking a bone hurts. Sort of. Remember the Starbucks straw sticking out of your butt? They start sucking on it like its some sort of Frappuccino Blended Coffee. That hurts. There is nothing local they can anesthetize in the hip bone. It is indescribable, unless you have had it done. It's like the Parris Island of cancer patients ("Had one?" "Yea, two actually." "Wow, more power to you...").
Wednesday or Thursday I get to do blood work. 30 vials of blood work. My previous record was 12. I'll ask if I can have a beer afterward for some real fun!
The schedule gets a bit hazy after that, waiting on those protocols to kick in, but I get my own semi-permanent exterior plumbing for injections and extractions, chemo, needles I have to inject into me and not the plumbing, hours (over days) of being hooked up to a harvesting machine, the a-bomb of chemo, then into the hospital for a few weeks to rebuild my bone marrow.
Won't be able to go to Disneyland for at least 100 days. DAMN!
Well, I started at 9:00, its 10:45, my steroids are still kicking in, and the sleeping pills are doing squat. I'll go to bed anyway.
jc
Anyway, I will post the history of how I got here later. Here is what is happening now.
I have been deemed a prime candidate for Autologous stem cell transplantation at the City of Hope up in Duarte. It seems simple. They suck out MY stem cells, store them on a shelf somewhere (hopefully not by the diet Coke), zap the cancer cells with a chemo a-bomb, sweep up my hair, give me back the stem cells to regrow my bone marrow, and I am all (mostly) better.
But, alas, it seems that there are "procedures" and strange oath to "do no harm", so I have to get tested, poked, prodded, plumbed, folded, spindled and mutilated (chrome dome). Sigh, my dream of being the first male supermodel is crushed.
The testing starts tomorrow. After I meet my Hematology Oncologist, I get an x-ray of my whole body, my chest (I guess its a different x-ray beam they use), EKG, 24 hours of urine (two buckets, please!), and everyone's favorite -- a bone marrow biopsy.
I had a bone marrow biopsy when I was in the hospital. They give you a local anesthesia in your butt cheek. Then comes the big needle. It looks like a spare coffee stir stick from the cafeteria. It has to be big and strong because when they jam it in you they have to break through your hip bone. Can't deflect right, can't deflect left, straight in -- and through. Local anesthesia doesn't go very deep. Breaking a bone hurts. Sort of. Remember the Starbucks straw sticking out of your butt? They start sucking on it like its some sort of Frappuccino Blended Coffee. That hurts. There is nothing local they can anesthetize in the hip bone. It is indescribable, unless you have had it done. It's like the Parris Island of cancer patients ("Had one?" "Yea, two actually." "Wow, more power to you...").
Wednesday or Thursday I get to do blood work. 30 vials of blood work. My previous record was 12. I'll ask if I can have a beer afterward for some real fun!
The schedule gets a bit hazy after that, waiting on those protocols to kick in, but I get my own semi-permanent exterior plumbing for injections and extractions, chemo, needles I have to inject into me and not the plumbing, hours (over days) of being hooked up to a harvesting machine, the a-bomb of chemo, then into the hospital for a few weeks to rebuild my bone marrow.
Won't be able to go to Disneyland for at least 100 days. DAMN!
Well, I started at 9:00, its 10:45, my steroids are still kicking in, and the sleeping pills are doing squat. I'll go to bed anyway.
jc
Great video on an new lost segment of voters
I do love the Onion News Network, they tend to get to the bottom of things, while skewering the powers that be...
It does show that the pollsters run campaigns in a harried fashion, jumping from one demographic to another, loosing the overall cohesive message. They parse and weasel the message to make it appealing to the broadest group of voters, the heck with what the candidate's values are (assuming they have any).
I like it when they can tie everything together...
"LAW & ORDER" - prosecute illegals, prevent terrorism before it starts, appoint judges that won't invent law, and follow through. What do we get? Don't prosecute illegals, unless they are REAL bad. Set rules in place that prevent the sharing of information between the military, FBI, CIA, and ICE. We get the 9th Circuit court. We end up with a corrupted culture of "looking the other way" for minor offences and wonder why we have major offences out of control.
"FISCAL RESPONSIBILITY" - Watch the budget like a hawk. Don't spend the precious tax dollars irresponsibly. No pork barrel projects brought in by ear mark spending. What do we get? A federal budget that has NEVER gone down. Hey, how about freezing the spending? Hurt too many bureaucrats? Tough. What about the children? They got by fine without the government for thousands of years, next year won't hurt them (and may help them).
I could go on, but I have to take my meds...
VIDEO using embedded link
Link to the page it came from
jc
It does show that the pollsters run campaigns in a harried fashion, jumping from one demographic to another, loosing the overall cohesive message. They parse and weasel the message to make it appealing to the broadest group of voters, the heck with what the candidate's values are (assuming they have any).
I like it when they can tie everything together...
"LAW & ORDER" - prosecute illegals, prevent terrorism before it starts, appoint judges that won't invent law, and follow through. What do we get? Don't prosecute illegals, unless they are REAL bad. Set rules in place that prevent the sharing of information between the military, FBI, CIA, and ICE. We get the 9th Circuit court. We end up with a corrupted culture of "looking the other way" for minor offences and wonder why we have major offences out of control.
"FISCAL RESPONSIBILITY" - Watch the budget like a hawk. Don't spend the precious tax dollars irresponsibly. No pork barrel projects brought in by ear mark spending. What do we get? A federal budget that has NEVER gone down. Hey, how about freezing the spending? Hurt too many bureaucrats? Tough. What about the children? They got by fine without the government for thousands of years, next year won't hurt them (and may help them).
I could go on, but I have to take my meds...
VIDEO using embedded link
Link to the page it came from
jc
A place to update everyone on their terms
I decided to start blogging at this point in my life, so that I can put down in one spot, what is happening.
True, I have fallen into the trap of being supremely narcissistic (like most of society) and I am probably just shouting into the wind, but I hope that it will at least provide an outlet for me ( and it's all about me, after all).
Feel free to comment, if I know you you will stay, if not, DO NOT try to sell anyone V1a.GR@ or time shares in Vegas.
True, I have fallen into the trap of being supremely narcissistic (like most of society) and I am probably just shouting into the wind, but I hope that it will at least provide an outlet for me ( and it's all about me, after all).
Feel free to comment, if I know you you will stay, if not, DO NOT try to sell anyone V1a.GR@ or time shares in Vegas.
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