Hang on for the ride

'Cause we're just getting started.

OK, I have to say, I just cleaned our bathroom floor and I had no idea how bad it was to take a week off. Don't know if most the hair on the floor is his or if it's because we have animals, but it was a mess!

Anyway, Gil is doing pretty good. He's had a few sniffles here lately, but we thing it's just the pollen and the cold snap we are having. He's been cautious by not going out too much when it's cold (he does play with snoopy in the front yard) and not going to visit Mom in the nursing home. I'm not sure how she is doing, but I know Dad is starting to feel pretty lonely at home. Dad visits her every day thanks to my sis-n-law's.

Back to Gil. This Wednesday as he was coming to pick up Dani at school, he got a call from Moffitt about starting the vital organs testing. Later on he got another call that they were working on a schedule and a place for us to stay (Hope lodge??). Then...it wasn't until friday that he saw the schedule on his "My Moffitt" page.

So, here's the first part:

March 12 starting at 8am - 2:30 pm
PET scan (no food), financial, pre-visit screening, meg lab?, social worker (maybe that's the psychologist?)

March 13 starting at 8:30 am - 11 am
Muga scan, NVO?, EKG, Pulmonary function test (no caffine)

March 14 starting 10:30 am - 2:40 pm
prep instructions, CT Scan

I'm putting in for my leave from work starting March 18th so we can get the house sitters settled in, the next set of prep-instructions and orientation classes. I'll cover that set of appointment later. We're a little overwhelmed as it is with the months worth of appointments. It does seem a couple are missing - surgery for the other catheter and the booster shots prior to apheresis (harvesting the cells).

More fun to come...

Upcoming schedule

Ok, today he's still pretty tired. BP has been up & down, still right around 100/60 something.
Sorry he didn't get to the lights at church, maybe next week or so.
So what's next?

Monday, Feb 25 is blood work and PET/CT scan
My prediction, low white cell count, and a better than 50% reduction in the lymph nodes & tonsils. They were said to be reduced by about 35% last time and that was just by touch.

Monday, March 4 is more blood work and the results of the scans. I think it will be this appointment that will set us up for the BMT. Hopefully at this point well get dates and be able to plan our leave time a little better.

We have yet to get Gil a dental, but I'm working on it; I have a call into a dentist we have used before, just waiting on a return call.
Haven't heard yet about a place for Dani, but I think they are working on a place in Lutz.

Thanks for the comments that have been left. Please, feel free to leave comments - we love to hear from you. I noticed we get some views from overseas! That's kinda cool - say 'Hi' - let us know who you are and where from!

If you have problems leaving a comment - just do one using anonymous mode, but make sure you 'sign' it; we like to know who you are (ok, I usually know you, mom).

Low numbers

Gil's blood pressure has been pretty low over the 24 hours. I really started to worry at work; he kept saying how bad he felt and how his numbers were like 88/52 or so. All I keep hearing is for him to drink more, but he's drinking almost to excess.

Well this afternoon his numbers were up...100/59...not great, but better!

We are both so tired, hopefully a good night sleep will cure a lot.

round 2 booster shot

3:45 pm
It went better than last time. From what he told me the nurse warmed it and pushed the shot in slowly, so maybe that helped his body adjust better to the neulasta than last time. Overall he is still having a reaction to this week - how low can blood pressure go? 82/52 just before dinner. He has had a little trouble standing up and walking at times.

He has blood work and a CT Scan on Monday. Guess we'll see how much this chemo has done and when the BMT process will start.

Other things going on...updated a bunch of computers at work (shockwave, java, flash, adobe reader & air, silverlight), been taking snoopy for a lot of runs - really need to hit the bowflex as my knee is starting to bug me.

Mom Sterling is still in the nursing home with some mixed emotional moments. Dad Sterling is trying to figure some things out being home on his own right now. Both Lori & Cheryl have been taking a lot of time to care for them.

I think I may have a sub potentially lined up, and house sitters. Just waiting on dates. And it looks like Forte exchange has found a place for Danielle. I feel bad we didn't find a place near Seminole so she could stay at Seminole High...Did we try hard enough? I don't know. I had 4 leads that all fizzled. I still think there is/was someone out there that could have done it, but....I guess it feels a little risky letting a stranger in your house, but the kid probably feels the same living with strangers.

It's coming together...I think.

Round 2, day 3

I actually haven't seen Gil today, so I'm not sure how his appointment went. I have spoken with him on the phone; he sounded tired.

It sounds like there are some light troubles at church. He plans to fix them Saturday...last time, by the weekend, he was real wobbly on his legs. I'm a little worried.

Otherwise, things seem to be going well. Tomorrow is booster-shot day. Hopefully it doesn't send him into a tailspin like last time.

Round 2 day 2

11am out by 2pm (approx.)
This is the 24 hr. pump of Ifosfamide preceded by etoposide. We actually went out to dinner tonight - I was going to go get take-out, but Gil was willing and wanted Red Robin, so off we went and even walked the mall a little bit. (Darn, I should have taken a picture)

He's been a bit warm today; not sure what to make of that. He's also apologizing for hair falling out all over the place...not from his head, but body hair! A little tired, but not as bad as yesterday.
He says the chemo stinks...I'm not sure I smell it, but I have a bad sense of smell.

Things are getting tense in other areas too.

At work they want to make sure my sub is computer savvy and willing to work with guidance during testing. I was recording the directions for the different tests, but started getting grief for that...I should be doing it, that's for the guidance counselors, they need to be live not recorded, editing, blah blah blah

We still haven't found a place for Danielle. We've been going around with the local rep and the district rep and...Forte. It's just confusing and frustrating.

Mom Sterling is in a rehab center and I'm not sure what all is going on there and church has a few events coming up.

Ah...let the good times roll!

Round 2, day 1

He worked a District wide training today with Pinellas county school performing arts teachers. He is the sound guy for the county!

1:15pm out by 2:30pm (except for waiting in line to pay)
Etoposide (VP-16)
It's hitting him a little different today - he's tired, and his left side is sore. I've also noticed he is a little out of breath. A little nap after dinner with merlyn & christian keeping him warm and snoopy keeping watch, unload the car, and tomorrow is another day.

And it's gone

Yup, it came off today, Valentines Day
We still have Danielle with us, so we all enjoyed a nice Valentine steak together.

So, tomorrow night Gil will be helping out with Valentine teen dance at church. Monday, he starts the chemo cycle again, so well be back to day one.

But wait, there's more...

So, shortly after we got back from Moffitt the other day, Mom Sterling was admitted to the hospital after suffering a series of strokes. She had tried to get a hold of us while we were in Tampa to inform us about her doctors visit.

Needless to say its been a rough couple of days. Gil is working closely with his sisters to make sure his parents are taken care of and hopefully get some things settled before he becomes unavailable.

Fun stuff!

Transplant prep-visit

Ok, this is a little nerve racking.
Lets see if I can remember what was said.
Shortly after Gil's next/last round of I.C.E. chemo (the week of Feb 18.?) this process will start:
1. Vital organs testing - scans, blood work, yada yada
2. He comes in for 1-2 days for the cells to be harvested with a white cell booster (neupenogen?) given twice while on a dialysis like machine.
3. 5 days of Chemo: (5) BNCU (4) Etoposide (3) Nma-c ? (2) Melphalan ? (1) booster (0) and the cells go back in. We have to stay local to the hospital for about 5 weeks.

There were 3 people who gave us minor variations of these instructions (nurse prac., Dr. and nurse coordinator), but we got the gist. Guess we'll be living on the USF campus for a while. I never even lived there when I went there!

I'm comparing this to rebooting or re-imaging a computer - wipe out all the cells and put the good ones back in. I also keep having images of the Harry Potter movie where they 're-grow' his bones
(Chamber of Secrets?)

So around the last 2 weeks of March he'll get the vital organs testing and we'll get a schedule then.

So....what to we do about work? How much sick time or leave can I get? What about the dogs? The house? Bills? OMG
Our apologies for putting anyone out...

WBC low

Blood work today - white blood cells are WAY low so, if you are sick, stay away. Gil & I love y'all, but...

Gil feels pretty good today and is considering going to the dog park tomorrow morning - although snoopy has been running & playing with me, he really needs to blow off some steam and run with his doggie friends. Gil has also said his hair feels a little 'crispy' but it sure is hanging on. He feels it needs to be cut...so should he just cut it all off and not worry about the probable? inevitable?

A big thank you to Stephon Moore for helping us out Sunday; helping Gil set up the antenna and get the show going Sunday night. Really appreciate the help. Also to Richard Saunders and Sheila Moree for helping out in the tech booth. We really appreciate your stepping up both on Sunday's and on special events..

If you want to leave a comment, I think you can click on the 'no comments' or maybe if there is one, click on comments,

Snoopy is missing his play-mate...

Hitting the wall

Thursday's booster shoot really did a number on Gil. After 2 restless nights and some issues I didn't know about (a little blood in the urine, not feeling well, the prospect of hospitalization), I'm glad he came home after his shot.

He's really been down the last couple of days. He's tired, but not sleeping well, very weak.
Dani is still complaining of back/hip pain from our little accident. It is getting a little difficult caring for both...overwhelming at times.

So, you say you want to help? we'd love to have someone come take snoopy for a walk, throw the wubba, or something. I've been taking him for runs and as fun as that is,, I'd like to go for a run alone.
I may also be looking for someone to pick up Danielle after school on Thursday, as Gil & I will be at Moffitt in Tampa for his bone marrow pre-transplant appointment; just not sure I'll be back in time to pick her up.

Day 4

Appt. 2:30pm
Booster shot

Still no paperwork from the last two days, but I do have a hefty bill for all the stuff since Jan. 2nd.
Last night was another rough one. One of the drugs irritates the bladder, so after a 24 hour infusion of liquid as well as the Dr. wanting a lot of hydration, urination follows..

Plans for today fell through due to fatigue - lack of sleep among other things. The Emend had done a wonderful job of keeping the nausea at bay during chemo.; now it is after. I've noticed. He is keeping the bucket close by.

Heartbreaking.

oops...forgot to post....

Day 3

Appt. 11:45am done 2:30pm

Don't have much in the way of details as Gil went right over to church after his appointment.
I do know he is rather tired, but I think work gets his mind off things: "keeping things as normal as possible"...more details to come...

2:30pm booster shot
11am sat. Funeral @ church
Sunday Super Bowl party @ church

Danielle volunteered today at Largo Med., I had my dermatology appointment then took snoopy for a run before picking Dani up. Trying to keep snoopy happy since he didn't go to the dog park this morning; didn't make much sense for Gil to take him with that pump attached.
Trying to keep everyone happy.

Day 2

Appt. 10:30am; done by 1:15pm
ifosfamide (i-FOS-fa-mide)

Not 100% sure of what all he was given today. I believe it was a repeat of what he had yesterday (etoposide (e-TOE-poe-side)) with the Ifosfamide (with anti-nausa) as a 24 hour or so? The paperwork he brought home only had information about the pump. He does have a little bag with a pump and the meds that he is hooked up to. He is complaining of achy-ness and, of course, they want him to drink a LOT so he pee's a lot. The Emend and other anti-nausea drugs seems to be working very well, although I am hyper-aware of every cough and hiccup.

Almost surreal. he's too young to be attached to a bag (no wife jokes, please). I have noticed him being a little unsure of somethings - maybe confusion, just may be a sign of being overwhelmed. He does seem fatigued (big surprise, right?)

I'm getting tired of dealing with the insurance company - 2 phone calls today about our little fender bender Thursday - even interrupted my workout - grrr. What seemed like such a benign accident seems to be a big deal to insurance companies. At some point I guess I need to get my car checked out (the adjusters office is open 7am - 7pm).

Well tomorrow is the last day of chemo (Carboplatin?); we'll see if he goes to church/work afterward. So far it seems like 'a-go'..

Day 1

Formerly Gil treatment was ABVD back in 2005-06
doxorubicin, which was originally called Adriamycin®, bleomycin, vinblastine , dacarbazine.

I think this is the ICE regimen Gil will be on this time. Not sure...we'll find out!

Schedule C

On the first day of ICE chemotherapy, you'll be given an infusion of etoposide for an hour. On the next day (day two) the etoposide will be repeated. You will also be given a 60-minute infusion of carboplatin and start a 24-hour infusion of ifosfamide and mesna.

On the following day (day three) you'll be given a third infusion of etoposide, again over about an hour. You will finish your 24-hour infusion of ifosfamide and mesna, and be given a 12-hour infusion of mesna on its own. After this, you'll have a rest period with no chemotherapy for 17 days. This completes a cycle of your treatment. Each cycle lasts for 21 days (three weeks).

After the rest period (three weeks after you started) the same drugs will be given to you again, beginning the next cycle of your treatment. Usually 2–4 cycles of treatment are given over 2–4 months. This makes up a course of treatment.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/ICER-ICE.aspx 

Appt at 1pm; out by 2:45pm
Etoposide (VP-16); aloxi & decadron (anti-nausea drugs) plus took Emend 1 hour prior to visit
Feeling ok, but feeling tired; a little dizzy (loopy in the head is how he put it)
Not sure he'll appreciate the picture, but I wanted to show how both dogs are keeping watch over him (mind you, Merlyn is practically deaf, so he feels everything)

Wild couple of days

Thursday 1/24

On the way home from work, actually to AT&T to take care of Danielle's pre-paid phone, we got rear-ended. I stopped for a car that was stopping for an ambulance and saw the sheriff coming behind me. Don't think I got anything out of my mouth before he hit us...I knew it might happen. He was looking for the sirens behind him, look front and...surprise! So he started to write it up - we moved off to their offices which were right near by (on Ulmerton between 113th and Seminole) - and two other officers showed up to write up the accident. No damage to my car except some minor dents in the tail pipe; took the grill completely off his cruiser; and no injuries. I also never touched the car in front of me so he left after making sure all was ok.
After dinner, Danielle started complaining of hip pain. She possibly twisted and strained against the seat belt - I think - so she wanted to get it checked out 'tomorrow' - Friday, after Gil's surgery. hmmm....

Friday 1/25
Gil had his port surgery. We were at the hospital shortly after 6am. We went through billing about 6:45 and then he was taken back for prep. I went back to see him about 7:30 and they promptly took him back to pre-op. They had a monitor in the waiting room that let you know the status of your 'case'...he was in pre-op a LONG time. I think an operation before him must have taken longer than planned. Anyway, he was done and I was allowed to go back to recovery/holding just after 11am and we left just after noon. After debating how to get his meds and the kid, who had been texting me on & off while waiting about going to the ER, and taking care of all that, I dropped him off at home and got him settled in.

Left the house around 1 pm, went to Walgreens and dropped off his script and off the school. I kept hoping her wanting to go the the ER would fall by the wayside, but no. She wanted to get checked out in case anything was wrong; "better safe than sorry" she kept saying.

So we got it cleared with her insurance and I took her to Largo Medical, where she also volunteers. It was probably around 2:30pm ...and I waited till about 3:30. She was in waiting for radiology. She kept telling me to go, so I figured I'd go ahead, pick up Gil's meds, play with snoopy for a bit, etc. While standing in line I got a call: She's under 17, I need to show her guardianship papers, and give some of my private info. I was in the middle of Walgreens and really did not want to give out my social security number! I told her I'd call back, but when I did, it was just a matter of getting back to the hospital with the needed paperwork. Grrrrr.....I went home, angrily apologized to Gil that he'd have to take care of the dogs, and stormed off back to Largo Med (which resulted in some angry banter), did what needed to be done, and sat with her in her room. I got a little impatient and started asking where things stood with her - finally got the Dr. who said x-ray's looked good, probably some strained muscles, so anti-inflammatory and muscle relaxants were prescribed. Off for home about 5:30pm...stop and put in her 'scripts...home to order pizza, a little laundry, try to settle down.

Was very glad to go to sleep. I know I'm probably babying Gil too much, but I wasn't able to care for him properly and feel very guilty.

Here we go...

So after a little mix up, I guess things are starting to roll. Moffitt has signed off on Gil having Chemo done before being evaluated for his marrow transplant, so the port goes in Friday 1/25 and chemo starts Monday 1/28.

This is where it get's hard. A while back when all this started, we were taking a nap one day over the Thanksgiving holiday. Gil started to cry in his sleep. It was only for a moment, but it really disturbed me. This is when you realize how difficult this is. It's hard to feel fine, and know you are about to be made so sick on purpose; you're about to be poisoned in the name of a cure. You wonder if it's worth it? what would happen if left untreated, and how long would it be?
We'll never really know.

Anyone up for customizing a barf bucket?

let the whirlwind begin...

"Ok, this is what I know so far; I see the Surgeon about putting a "Port" in on Monday. Dr. Ball hopes it's in by Thursday, and I should start a Chemo treatment called I.C.E. by the 29th. The possible hold up is Moffitt, I'm waiting to find out if they need to see me before treatment, or not. The treatment will be 3 days of chemo, off 21 days. It's a very rough chemo (of course what chemo isn't?), rougher then the last one I did. Hopefully only 2 treatments (fingers crossed) Then a bone marrow transplant, which I will be my own donor. I'll keep you posted." ~ Gil


Gil finally got his appointment with Moffitt: 9:30 am on February 7th; this is for a bone marrow evaluation and....not sure what else, but they suggested I come along and that he should block out about 4 hours for whatever it is they are going to do.

Right after that he got phone call from his oncologist that he needed to be seen right away: 11:45 friday morning (today, Jan 18th). That's where the above information comes in. He has an appointment on Monday, jan 21st with Dr. Berry regarding getting the port put in; looks like Dr. Ball is planning for things to get started pretty quick now. ICE refers to the chemo regimen of Ifosfamide, Carboplatin, and Etoposide that is administered over a series of 3 days, then 21 days off; he is hoping for 2 rounds. Then it seems this will all be followed by a bone marrow transplant - of his own marrow. Not sure how that works, but we'll find out!

The problem is, Dr. Ball wants to start chemo before he is seen by the Dr. at Moffitt, which I'm thinking will alter the marrow before it's tested or harvested, so we have a call into moffitt to check on this.

BTW - still in search of a new host family for Danielle. We thought we were all set with a family and she was ready to move this weekend, but they changed their mind.

PET & Bone marrow biopsy

Gil had his PET scan this week and on Friday, he had a follow up with Dr. Ball and his bone marrow biopsy.
According to Dr. Ball, the PET scan revealed that his tonsils are lighting up - about an 8 where as the other nodes are about a 4 or under - higher the number, the worse it is. I guess they use some pretty radioactive stuff, because one of the nurses was pregnant and couldn't go near anyone once the contrast was injected. So his tonsils must have adsorbed a lot of the contrast and, BANG, there they are. Unusual, but not enough that the Dr. wants to take them out; our assumption is that as long as it is self contained, why risk letting it out? Otherwise we really don't know why to leave them in.

The bone marrow biopsy went well. He's sore but functioning without a cane or any assistance. Getting up and down from sitting or using stairs gets old pretty quick. We still have not heard from Moffitt about his evaluation or recommendations regarding a transplant. There appears to be an appointment on the books for Jan 17th, but there is no time listed nor have we received a call! hmmm....

Well, a port has been recommended so...
Moffitt on the 17th?
Call Dr. Barry about putting in a port
Follow up with Dr. Ball on Jan 25th

In the meantime, several of my friends did Disney Marathon Weekend this weekend - Congrats to all the runners (RunVie & Team In Training)! They raised tons of money for Leukemia and Lymphoma society doing research and patient services; A very worthy cause!

Also, Jack Jones (great nephew) turned eight this weekend; we got to see Shannon & Matt's new house and their newest addition, sir Guinness - a boxer-mix pup. SO CUTE!
That's a PET scan of a different kind! Jude (great niece) has some baby competition.