Today was relatively quiet, no visitors (yet). I was busy on the phone and computer with Kristin, Mom, Dad, and the girls calling.
Got a great card from Henry Roder, it actually came snail mail -- and got here in time!
At this point, I can walk about for short periods without my "tree of life" following me. I have to wear a mask and gloves, so I don't catch anything from the great unwashed public. It is nice to walk around without the constant irritation of tubes and low level clicking and humming. This pleasure will probably cease at by the weekend, as the doctors expect my blood counts to crash, necessitating me to be hooked up and primed with antibiotics, anti fungal, and anti viral drugs.
There was the fire alarm going off, kinda messed up my nap time. Someone was over zealous with the popcorn, scorched it, and set off the alarm.
Well, I am going to walk a bit (while I can).
jc
Day Zero
Well, I have my stem cells back. Actually, only half of the 9.1 million, the rest in reserve.
They gave me some pre-meds for nausea, antibacterial and anti fungal treatments. Gotta keep those buggers down now.
The actual treatment was pretty low key. They just hooked me up to another drip
on my pump tree, pushed it in me, and it was done in 25 minutes.It feels good that this is such a routine procedure, that there was no hitches, complications, or panicky calls for a doctor.
Cold! The cells were frozen, so they defrosted them (no microwaves here!) just enough to get them flowing. The cold slush travels through the plastic tubing, into my catheter, up my jugular, and through the heart -- and hopefully on to recharging the destroyed bone marrow.
Afterward, I just took a hour and a half nap.
Pretty quiet day, though ultimately the most vital day of my adult life.
jc
Last day of chemo, all OK
Kristin and my parents visited today, and I walked down the hall.
Exciting.
Actually, I enjoy the company, it just does not last long enough.
It could be worse, luckily I have the computer to keep me occupied, as TV just doesn't cut it. Radio is ranting about the bail out plan -- BORING.
It is depressing to think that the idiots who got us into this mess are now "saving" us. As if.
Sigh, it's time for bed.
jc
Exciting.
Actually, I enjoy the company, it just does not last long enough.
It could be worse, luckily I have the computer to keep me occupied, as TV just doesn't cut it. Radio is ranting about the bail out plan -- BORING.
It is depressing to think that the idiots who got us into this mess are now "saving" us. As if.
Sigh, it's time for bed.
jc
The first full day at the City of Hope
Well, the highlight was Kristin coming and watching "Blazing Saddles" with me.
The first round of chemo seems to have gone through without a hitch. No dizziness, nausea or other side effect -- yet. I suppose that tomorrow they crank it up to 11 and zap me hard. Or not.
Dinner was adequate, pasta with potatoes and tapioca pudding.
If this keeps up, I will go crazy!
Nurse is changing my caps, bye
jc
The first round of chemo seems to have gone through without a hitch. No dizziness, nausea or other side effect -- yet. I suppose that tomorrow they crank it up to 11 and zap me hard. Or not.
Dinner was adequate, pasta with potatoes and tapioca pudding.
If this keeps up, I will go crazy!
Nurse is changing my caps, bye
jc
Impressions of my first night
Well, the first night is over, and I have a few observations.
First, I miss my bed, pillow, and open window. The sterile vinyl bed, non absorbent pillow, and locked and sealed for my safety windows put a cramp in my style.
The constant click-click-click of the four IV pumps are not enough to come to the forefront of my consciousness, but click-click-clicks away at my subconscious. They also beep. Quie
tly at first. Then if ignored, they get really pissed off and go BEEP BEEP BEEP! Usually this happens just after you get back to sleep after your midnight blood draw (11 vials yesterday, 5 today ).
I forgot how skinny they make beds. I always said, the best marital aide is a King sized bed. While it is sort of cool to have it pop up and down, it is still a plastic vinyl (not even naugahyde ) mattress. I discovered that I sweat at night. Not major puddles, but just enough to "get sticky". Not very conducive to restful sleep.
The food isn't bad, once you figure out the system. I foolishly ordered steak with a side of corn, and a slice of chocolate cake. I have eaten bigger slices of beef jerky than this steak. Corn was good, but it's tricky when you are in bed (they roll off the spoon). Not quite enough for the night, so I ordered popcorn and apple pie before the kitchen shut down.
Breakfast and lunch today were actually good. Scrambled eggs, hash browns, bacon, biscuits and gravy... Yum! For lunch I had the chef's special, BBQ burger with cheese and fries.
They gave me my first chemo today. Looked like about a 1/4 cup of clear fluid. They prepped me with several anti nausea, anti this, and anti that potions, so I don't feel bad at all.
One last observation, in this hospital everyone entering the rooms must be gloved and masked. I am having difficulty dealing with people without the visual feedback of their face. I crack a joke, no smile (that I can see). It is like dealing with passive aggressive people, you just don't know. Makes communication difficult.
Gotta nap!
jc
First, I miss my bed, pillow, and open window. The sterile vinyl bed, non absorbent pillow, and locked and sealed for my safety windows put a cramp in my style.
The constant click-click-click of the four IV pumps are not enough to come to the forefront of my consciousness, but click-click-clicks away at my subconscious. They also beep. Quie
tly at first. Then if ignored, they get really pissed off and go BEEP BEEP BEEP! Usually this happens just after you get back to sleep after your midnight blood draw (11 vials yesterday, 5 today ).I forgot how skinny they make beds. I always said, the best marital aide is a King sized bed. While it is sort of cool to have it pop up and down, it is still a plastic vinyl (not even naugahyde ) mattress. I discovered that I sweat at night. Not major puddles, but just enough to "get sticky". Not very conducive to restful sleep.
The food isn't bad, once you figure out the system. I foolishly ordered steak with a side of corn, and a slice of chocolate cake. I have eaten bigger slices of beef jerky than this steak. Corn was good, but it's tricky when you are in bed (they roll off the spoon). Not quite enough for the night, so I ordered popcorn and apple pie before the kitchen shut down.
Breakfast and lunch today were actually good. Scrambled eggs, hash browns, bacon, biscuits and gravy... Yum! For lunch I had the chef's special, BBQ burger with cheese and fries.
They gave me my first chemo today. Looked like about a 1/4 cup of clear fluid. They prepped me with several anti nausea, anti this, and anti that potions, so I don't feel bad at all.
One last observation, in this hospital everyone entering the rooms must be gloved and masked. I am having difficulty dealing with people without the visual feedback of their face. I crack a joke, no smile (that I can see). It is like dealing with passive aggressive people, you just don't know. Makes communication difficult.
Gotta nap!
jc
I'm in the zone now...
I was scheduald for an 11:00 appointment, but yesterday they called and told me I was to be "on call".
They called at noon asking where I was.
Got to COH at 12:50, checked in, and waited.
And waited.
got into the room after 3:30.
Nice room. Cable, DSL, a view of the 605. The pidgens hang out and tap on the window when they want attention. Nurses come in to draw blood (11 so far today), and I have a good sized menu to order dinner from.
It definately could be worse.
Tomorow is the start of treatment, so I shoud get some rest -- I also get to watch the Angels on FSW without kids interupting.
jc
Oh, my room is 6125. Phone is 626-359-8111, but it is better to call me on the cell phone. Skype is also up and running ( jim.is.ill ).
Esh, holding pattern again...
Once again, the time table changes. Hopefully, they will have a bed for me tomorrow, until then, I am in a holding pattern.
We need someone to get those other sickies up and out of their beds!
jc
We need someone to get those other sickies up and out of their beds!
jc
Time and Date set!
The time: sometime before tea (11:00)
The place: City of Hope in Duarte
The reason: check in to the hospital for treatment
Finally it happens. The stem cells are prepped, the chemo is set, and all I need is a bed (and a room).
FAQs
Can I come up and visit? Yes, but you will need to scrub up, mask up, and glove up before entering the room. While I appreciate any and all visitors, I totally understand that it is a long trip (32 miles one way from Fullerton), and Duarte is not exactly the garden spot of Southern California.
OK, it's a pain in the ass to drive up, can I call? Of course! I will have my cell phone with me, so you can call that phone (local to OC). You can also e-mail me often.
You will have a computer? Yes, TV and radio can fill the void only so much. The main reason is so I can have SKYPE with me, and you can call me that way ( search JIM.IS.ILL ) and we can video conference. Plus, I will be playing Battlefield 1942, blowing up Germans...
Where do we send flowers? Don't. Flowers, plants, even balloons are forbidden on the hospital floors. Save your money. Since everyone there has no immunity to allergens or disease, they keep them far away from folks.
How long will you be in there? Two weeks, possibly more. More time at home to recover, with a possible second treatment in 6 weeks or so. I will be "fragile" for 2-3 months.
When is it a good time to call/skype/visit? Pretty much any time. I will try to stick to my schedule of being awake from 7am to 10pm. I will nap a lot, but don't let that stop you. If it's inconvenient, I will let you know.
That SKYPE thing on the side of the post, says you are unavailable, can I still call you? Yes, that seems to be a bit buggy, but it's better than nothing. Remember, I can't go very far away from the computer. Call the JIM.IS.ILL account, that goes to the laptop.
That's all I can think of at the moment, so have fun while you can!
jc
The place: City of Hope in Duarte
The reason: check in to the hospital for treatment
Finally it happens. The stem cells are prepped, the chemo is set, and all I need is a bed (and a room).
FAQs
Can I come up and visit? Yes, but you will need to scrub up, mask up, and glove up before entering the room. While I appreciate any and all visitors, I totally understand that it is a long trip (32 miles one way from Fullerton), and Duarte is not exactly the garden spot of Southern California.
OK, it's a pain in the ass to drive up, can I call? Of course! I will have my cell phone with me, so you can call that phone (local to OC). You can also e-mail me often.
You will have a computer? Yes, TV and radio can fill the void only so much. The main reason is so I can have SKYPE with me, and you can call me that way ( search JIM.IS.ILL ) and we can video conference. Plus, I will be playing Battlefield 1942, blowing up Germans...
Where do we send flowers? Don't. Flowers, plants, even balloons are forbidden on the hospital floors. Save your money. Since everyone there has no immunity to allergens or disease, they keep them far away from folks.
How long will you be in there? Two weeks, possibly more. More time at home to recover, with a possible second treatment in 6 weeks or so. I will be "fragile" for 2-3 months.
When is it a good time to call/skype/visit? Pretty much any time. I will try to stick to my schedule of being awake from 7am to 10pm. I will nap a lot, but don't let that stop you. If it's inconvenient, I will let you know.
That SKYPE thing on the side of the post, says you are unavailable, can I still call you? Yes, that seems to be a bit buggy, but it's better than nothing. Remember, I can't go very far away from the computer. Call the JIM.IS.ILL account, that goes to the laptop.
That's all I can think of at the moment, so have fun while you can!
jc
New gadgets...
Check out the skype gadgets I just installed. Please play with them, so I know they work.
jc
jc
Scary things at Disneyland -- Pre Halloween!
The crowds have thinned a bit at Disneyland, and I have been taking the girls there more often (while I can). While it's not Bats Day (dark, gothic idiots walking around in 90 degree heat) or Gay Day ('nuff said), you still can find freakishly dressed people around.
While I am obsessing about my hair, I saw two unfortunates that I had to take pictures of.
Purple Hair -- something to distract from the big butt, probably. Why would someone ruin perfectly good hair? Makes no sense to me.
Ultimate Mullet -- over compensating for the bald spot? Look, at some point, give up the youthful long hair. It's gray, stringy, and probably gets in your chicken noodle soup. You are not a Jedi
Knight in training, either. Yes, it's impressive, probably taking the better part of 20 years of not cutting it, but it's over. It's 2008, not 1968.The thing is, if you stare at them, they get irritated about it. Gosh, is that not what you wanted in the first place?
I have the same disdain for tattoos, and unless you are a pirate or a Marine, you are just a poser...
TIP: Click on the picture for a larger image, you will be frightened.
What has been happening lately
Actually, not much.
I am on hold with the COH until the 26th of September for admission, after which things will happen fast and furious.
I am using the time to relax, get mentally prepared, and catch up with some small projects around the house. I am also trying to spend time with the girls, doing various things (Disneyland).
The bald thing is also taking some getting used to. The wind blows over my head... and I feel it! Strange. Wearing a hat outside (I am not hep to putting sun block on). I have to keep shaving it, because if not, I will have fuzz when the next chemo zaps me. Fuzz is more annoying than long hair. I will see how I feel about it in October.
Well, Kristin and Catie are on their way home, so we are off to D-land.
jc
New hair style!
Well, it happened. Showering this morning, hair was coming out, getting in my face, and being generally bothersome. What do I do when something bugs me? Wipe it out!
Boy, it's cold.
When I went to the cheap barber this morning, I pulled out a chunk of hair and told her "take it all off!"
Since I have been going there for a while, she said "Number 2?", and I told her "NO! Number Zero!"
Let's see how Kristin likes it tonight...
jc
Leave a comment as to how you like it
9.1 Million!
Sorry, I have been fatigued and busy to update lately. Here is the big scoop... 9.1 million stem cells collected in 4 sessions! They say that that is pretty good (but they may just be blowing sunshine up my skirt for all I know).
So what does that mean? I get to stop commuting to Duarte every morning. I have forgotten how miserable drive time is. They no longer hook me up to a Rube-Goldberg type of machine to take the blood out, filter it, then put it back in. I no longer have to take Nupagen shots in the leg (sorry Kristin, no more stabbing the husband anymore).
I still have to take care of the Hickman Catheter (It's in my chest, Gary -- sheesh!). That means care around the wound site, daily double Heperin shots through the tube, and not being able to shower without covering the wound site in plastic sheeting.
I am looking forward to getting my stamina back, the Nupagen causes fatigue, and encourages bruising. Last Sunday, Jenna had an early birthday party (I'll be in the hospital on her actual birthday), and I really felt beat afterward. Getting the house ready on Saturday, I pushed a bit too much, hit the wall, and couldn't rebound as fast as I wanted.
Well, the girls are up from their nap, and I have to negotiate a treaty on who plays with what.
jc
So what does that mean? I get to stop commuting to Duarte every morning. I have forgotten how miserable drive time is. They no longer hook me up to a Rube-Goldberg type of machine to take the blood out, filter it, then put it back in. I no longer have to take Nupagen shots in the leg (sorry Kristin, no more stabbing the husband anymore).
I still have to take care of the Hickman Catheter (It's in my chest, Gary -- sheesh!). That means care around the wound site, daily double Heperin shots through the tube, and not being able to shower without covering the wound site in plastic sheeting.
I am looking forward to getting my stamina back, the Nupagen causes fatigue, and encourages bruising. Last Sunday, Jenna had an early birthday party (I'll be in the hospital on her actual birthday), and I really felt beat afterward. Getting the house ready on Saturday, I pushed a bit too much, hit the wall, and couldn't rebound as fast as I wanted.
Well, the girls are up from their nap, and I have to negotiate a treaty on who plays with what.
jc
Stem Cell Update
Well, for a successful transplant, they usually need 5 million stem cells. For Myloma patients, they like 10 million (but will settle for 8 million) -- enough for 2 complete transplants.
The first day my collection was 2.1 million, not bad they said.
The second day I filterd out 2.9 million -- great progress, half way there!
The third day (Friday) I pumped out 2.6 million.
Just short of the minimum. Drat. So, once again, up before dawn, drive an hour in traffic, lay on my butt for four dull hours, and drive home in traffic again. Just like a #@$%# job!
There are no real side effects from this harvesting, I just feel beat when I get home. The folks are super nice, and make it as pleasurable as possible. Just kills any momentum I may have had.
==============================================================
While I was there on Thursday they had two small girls getting their blood processed. To say it was difficult to watch is an understatement.
I am so blessed to have two very healthy girls, and I pray that they need not have this happen to them.
jc
The first day my collection was 2.1 million, not bad they said.
The second day I filterd out 2.9 million -- great progress, half way there!
The third day (Friday) I pumped out 2.6 million.
Just short of the minimum. Drat. So, once again, up before dawn, drive an hour in traffic, lay on my butt for four dull hours, and drive home in traffic again. Just like a #@$%# job!
There are no real side effects from this harvesting, I just feel beat when I get home. The folks are super nice, and make it as pleasurable as possible. Just kills any momentum I may have had.
==============================================================
While I was there on Thursday they had two small girls getting their blood processed. To say it was difficult to watch is an understatement.
I am so blessed to have two very healthy girls, and I pray that they need not have this happen to them.
jc
Oh, I survived
Yesterday was busy, stem cell collection, Kristin interview, kid pickup, dinner, welocme back to school night, and >crash< fitful sleep.
Good news: it's not bad at all.
Bad news: it's not over. They need 10 million cells, not the typical 5 million. At best they can get 5 in one day, but there are many factors that say I may not get there. I will find out today how many I did yesterday.
Gotta go, don't want to be late.
jc
Good news: it's not bad at all.
Bad news: it's not over. They need 10 million cells, not the typical 5 million. At best they can get 5 in one day, but there are many factors that say I may not get there. I will find out today how many I did yesterday.
Gotta go, don't want to be late.
jc
City of Hope stem cell collection
Today is harvest day. It's 6:10 am, and we will leave soon to get to COH. I will update later today as to what happens.
jc
jc
And so it begins...
Last night, after unscrewing up my computer (screwing down?)with the invaluable help of my BFF Neal, the bone pain they have been warning me about hit.
Once again, a new level, a new form, a totally new experience with pain.
The Nupagen is supposed to stimulate my bone marrow into producing more blood and blood by products. Things I need, like white blood cells, red blood cells and most importantly, stem cells. The problem is, I felt it. Every over stimulated cell, pushing out with each heart beat. Each wave of cells accompanied by pain: pump, puMP, PUMP, PUmp, pump. Each pump taking my breath away, as the rib cage seemingly contracts to push out the life giving cells. The pelvis bone pumping out cells, making the knees weak. The spine thrusting out plazma, but making me hunch over like an old man.
The Rx for pain they gave me didn't kick in for what seemed forever. Vicodin is supposed to be taken (according to the directions) once every four hours. The problem, is that the pill lasts only three hours. Tough to sleep that way. I called the nurse at COH, and she said I can take two tablets. Joy.
The pain has stoped at this point, I don't know if it is the pills or that it has gone away on it's own.
Oh, well. This cheered me up this morning. A great new movie coming out, watch some of it here:
I'll go see it!
jc
Once again, a new level, a new form, a totally new experience with pain.
The Nupagen is supposed to stimulate my bone marrow into producing more blood and blood by products. Things I need, like white blood cells, red blood cells and most importantly, stem cells. The problem is, I felt it. Every over stimulated cell, pushing out with each heart beat. Each wave of cells accompanied by pain: pump, puMP, PUMP, PUmp, pump. Each pump taking my breath away, as the rib cage seemingly contracts to push out the life giving cells. The pelvis bone pumping out cells, making the knees weak. The spine thrusting out plazma, but making me hunch over like an old man.
The Rx for pain they gave me didn't kick in for what seemed forever. Vicodin is supposed to be taken (according to the directions) once every four hours. The problem, is that the pill lasts only three hours. Tough to sleep that way. I called the nurse at COH, and she said I can take two tablets. Joy.
The pain has stoped at this point, I don't know if it is the pills or that it has gone away on it's own.
Oh, well. This cheered me up this morning. A great new movie coming out, watch some of it here:
I'll go see it!
jc
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