I was very proud of myself at one point last week. Gil had gone to the oncologist to schedule his new chemo. When he got home he had an info sheet for a different drug than what the Dr. at Moffitt had mentioned. Now, I realize the Dr. at Moffitt has a strong hispanic accent (from Colombia?) and I almost got the drug name wrong, so I was sure our Dr. had gone by what she heard on the phone and not read his notes yet. So I called, left a voice message and later, when they called back, they confirmed that, after reading Dr. Ayala's notes, Dr. Ball ordered the Acetris for Gil.
Brentuximab and Rituximab (generic names) can sound very similar. I was glad to get everyone on the same page!
Well, today he was supposed to have chemo, but it turns out it is a special order drug and needs paperwork done and signed off on, so....it's on order now! No chemo today, next week.
Gotta call Moffitt so they can change our schedule again.
In the meantime, we are enjoying spring break (not doing much but church stuff) and some unusually cool weather.
Tuesday, March 26, 2013
Sunday, March 24, 2013
Holy hell week, Batman!
Some days I'm just beside myself. Yesterday, our church had a family fun day. Egg hunts, bouncy house, bunny pictures, games...something we've done for the past few years. I was taking pictures, did bunny duty (as the bunny as well as became the bunny attendant), then Gil called for me. There was a problem in the sanctuary. The night before there had been a big storm and the church got struck as it often does. The house lights would work, but the stage or alter lights didn't. Everything else worked fine, but no lights up front, and our church is built without windows or natural lighting in the alter area. It is a bit of a theatrical set-up, but we are one of those churches who needs it. After a bunch of troubleshooting, unplugging & replugging, restarting....nothing. We think it's the light board.
As it was, we had one light Gil had just changed a lamp in, one at home because it wasn't working and was causing others to stop working and one of the 'smart bars' that the lights plug into.
And now this?
But it's Holy week!! We have Palm Sunday services (which went really well by candle light), Maunday Thursday dinner & play, service of darkness for Good Friday (fitting), and 3 Easter services!!
And more storms to come, and I'm not just making an allegory, that's part of life in Florida!
Plus we got turned down for financial assistance from Moffitt (darned retirement fund?) and the earlier news that changed all our plans. I hit the wall - Just shut down.
Most of the time I can distance my feeling pretty well, keep it all logical (go Spock), just keep going and get it done. Then, all it takes is a burnt dinner or something and I lose it....shut down, get pissed, or just start crying.
There is just so much going on, and so much to do, I just lose the will to do it. I still feel like I should be preparing to leave, but I know we have another 8 weeks. This week is spring break, but it's going to really throw me off come Monday April 1st...no joke, it's back to school!
One day at a time, sweet Jesus.
For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. ~ Isaiah 55:8
OH...just a little add on, Gil starts a new chemo on Tuesday (Acetris), and there's also a school that is ready for an install (sound equipment). YAY!?
As it was, we had one light Gil had just changed a lamp in, one at home because it wasn't working and was causing others to stop working and one of the 'smart bars' that the lights plug into.
And now this?
But it's Holy week!! We have Palm Sunday services (which went really well by candle light), Maunday Thursday dinner & play, service of darkness for Good Friday (fitting), and 3 Easter services!!
And more storms to come, and I'm not just making an allegory, that's part of life in Florida!
Plus we got turned down for financial assistance from Moffitt (darned retirement fund?) and the earlier news that changed all our plans. I hit the wall - Just shut down.
Most of the time I can distance my feeling pretty well, keep it all logical (go Spock), just keep going and get it done. Then, all it takes is a burnt dinner or something and I lose it....shut down, get pissed, or just start crying.
There is just so much going on, and so much to do, I just lose the will to do it. I still feel like I should be preparing to leave, but I know we have another 8 weeks. This week is spring break, but it's going to really throw me off come Monday April 1st...no joke, it's back to school!
One day at a time, sweet Jesus.
For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. ~ Isaiah 55:8
OH...just a little add on, Gil starts a new chemo on Tuesday (Acetris), and there's also a school that is ready for an install (sound equipment). YAY!?
Wednesday, March 20, 2013
Set-back
Well this was a little unexpected. Due to his tonsil still showing signs of disease, they don't want to do the transplant yet. They want him in total remission before moving ahead with the transplant process.
What does this mean?
2 rounds of a new chemo therapy (Brentuximab vedotin/Adcetris) and moving the BMT to late May.
Lots of change of plans - our leave from work, cancel the house sitter - or at least reschedule, don't have to worry about housing for a while, summer plans change too.
He shouldn't have to go through organ testing again - yay - but do we cancel our appt with the social worker today? Evidently, No
The class & psychologist tomorrow? Yes
Ugh ....
Social worker: ok, so turned in the paperwork for any financial assistance. Once we have new dates, we can out in a request for lodging. Convenience would be to be in place (in Tampa) prior to transplant ...when he's getting the neutrogin shots, then after transplant is mandatory.
Sometimes you just want it done and over, not more waiting. 😓
What does this mean?
2 rounds of a new chemo therapy (Brentuximab vedotin/Adcetris) and moving the BMT to late May.
Lots of change of plans - our leave from work, cancel the house sitter - or at least reschedule, don't have to worry about housing for a while, summer plans change too.
He shouldn't have to go through organ testing again - yay - but do we cancel our appt with the social worker today? Evidently, No
The class & psychologist tomorrow? Yes
Ugh ....
Social worker: ok, so turned in the paperwork for any financial assistance. Once we have new dates, we can out in a request for lodging. Convenience would be to be in place (in Tampa) prior to transplant ...when he's getting the neutrogin shots, then after transplant is mandatory.
Sometimes you just want it done and over, not more waiting. 😓
Saturday, March 16, 2013
Prepping
All this prep-work has Gil little overwhelmed. He's been poked and prodded so much this last week it made him really tired yesterday. Although he is feeling good - he did some work at church changing lights, doing musical arrangements - he still tires out easily.
All the testing this week (PET, CAT & Muga scans, about 12 tubes of blood for tests, pulmonary function...), meeting the financial officer (Yikes! This is expensive), social worker (who was out sick, so had a sub), has left us a little worried and confused. We will be applying for financial assistance that may cover our lodging among other things. Some of the info regarding visitors and giving me (the caregiver) a break was a little confusing so I hope we find out more this week.
I started my leave of absence from work. Getting a note from the Dr.'s office has been more challenging than expected. Thought I had everything settled a week ago, but they haven't sent it yet (that I know of), the dates are all wrong for what I put in for - but I'm his primary caregiver so I can't work the entire time I'm with him, not just for his basic treatment! Frustrating!
And wouldn't you know it, I caught a cold. I'm doing everything I can to get rid of it quickly, but better now than while he's in treatment, right?
I'm guessing that overwhelmed feeling Gil has had this week will hit me soon enough. Maybe I can keep myself distanced enough, but I gotta keep my head on and clear.
This week's schedule:
March 20: Meet with Dr. 10am - 11am
March 21: Class 10 - 11:30am, Psychologist 12:30 - 2:30pm
If you are interested in the gift of giving, please give to your favorite charity! Some that are currently near & dear to us are:
American Cancer Society - they fund Hope Lodge among other things
Leukemia & Lymphoma society - they fund some of the best research and have been a great source of information.
Also, Team in Training is a great fundraising athletic group for the LLS - I am an alumni and if you would like to help support an athlete supporting the LLS, I will happlily give you information.
And of course please support Moffitt Center - the hospital that will be caring for Gil is a non-profit organization itself.
As we find out more we will let you know. As we prepare for our move we may ask for a little help from our friends. And if you want to give the gift of entertainment (who knows what kind of time we'll be spending in our housing) we are fans of iTunes and Amazon gift certificates!! :)
We thank you all for your continued support and hope this blog may help someone else understand their experience - you are not alone.
All the testing this week (PET, CAT & Muga scans, about 12 tubes of blood for tests, pulmonary function...), meeting the financial officer (Yikes! This is expensive), social worker (who was out sick, so had a sub), has left us a little worried and confused. We will be applying for financial assistance that may cover our lodging among other things. Some of the info regarding visitors and giving me (the caregiver) a break was a little confusing so I hope we find out more this week.
I started my leave of absence from work. Getting a note from the Dr.'s office has been more challenging than expected. Thought I had everything settled a week ago, but they haven't sent it yet (that I know of), the dates are all wrong for what I put in for - but I'm his primary caregiver so I can't work the entire time I'm with him, not just for his basic treatment! Frustrating!
And wouldn't you know it, I caught a cold. I'm doing everything I can to get rid of it quickly, but better now than while he's in treatment, right?
I'm guessing that overwhelmed feeling Gil has had this week will hit me soon enough. Maybe I can keep myself distanced enough, but I gotta keep my head on and clear.
This week's schedule:
March 20: Meet with Dr. 10am - 11am
March 21: Class 10 - 11:30am, Psychologist 12:30 - 2:30pm
If you are interested in the gift of giving, please give to your favorite charity! Some that are currently near & dear to us are:
American Cancer Society - they fund Hope Lodge among other things
Leukemia & Lymphoma society - they fund some of the best research and have been a great source of information.
Also, Team in Training is a great fundraising athletic group for the LLS - I am an alumni and if you would like to help support an athlete supporting the LLS, I will happlily give you information.
And of course please support Moffitt Center - the hospital that will be caring for Gil is a non-profit organization itself.
As we find out more we will let you know. As we prepare for our move we may ask for a little help from our friends. And if you want to give the gift of entertainment (who knows what kind of time we'll be spending in our housing) we are fans of iTunes and Amazon gift certificates!! :)
We thank you all for your continued support and hope this blog may help someone else understand their experience - you are not alone.
God has also given each of us different gifts to use. If we can [minister], we should do it according to the amount of faith we have. If we can serve others, we should serve. If we can teach, we should teach. If we can encourage others, we should encourage them. If we can give, we should be generous. If we are leaders, we should do our best. If we are good to others, we should do it cheerfully. ~ Romans 12:6-8 (CEV)
Monday, March 11, 2013
Crazy Day!!
After the time change, I don't know how Gil's day has gone, but a quick stop at Starbucks this morning, and my day got off to a crazy start. PERT testing (a college ready-ness test) was this morning and we weren't quite ready for it. Passes didn't go out as we (guidance counselor & I) had hoped so things did not get started as we hoped. Hopefully tomorrow will be better.
I was hoping Gil might pick up Dani so I could go for a run, but he had a lot going on: His dad going to the nursing home to visit mom, a run thru of the Easter play at church, including setting up a black-out curtain, and then meeting up with a friend of his from Tallahassee (Hi Alan!!). So when I got home I went for a run with Snoopy.
I had been waiting to hear about Dani's new family, and when on the third lap around Datsko park, I let Snoop off leash for a bit. That's when I got the call...and snoopy disappeared. I had just passed a dad carrying his kid on his shoulders and I think the extra large person scared snoop and I was on my phone about Dani's new family and didn't react quick enough!!
After freaking out for about 20 minutes, wandering around the park, calling for him, asking if anyone had seen him. Called Gil, got him all worried too. Finally called Danielle and asked her to take a look outside and within minutes she called me back...he was home.
I didn't record how fast I ran home, but it was fast, I think. I just know I was so happy and relieved when I opened the door and Snoopy greeted me. Dani was kind of funny. She said she opened the garage door and he charged at her from the neighbors yard. He was so happy to be home...and I was happy when I got home and he was there safe & sound.
Finally, got our lead on Danielle's new family. It's been a while coming, but it looks like we finally have a home. We will be moving her tomorrow evening. I have 2 meetings tomorrow after school so Gil may have to do the move. That will make a busy day for him after day full of appointments at Moffitt.
Otherwise we are doing fine. It's going to be a busy week as Gil starts his organ testing this week, plus all the Easter stuff starting up.
March 11: easter play; experiment with blackout screen
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?); Hopefully we'll find out about housing at this point and I'll get with our potential house sitters; Move Dani ??
March 13 starting at 8:30 am - 11 am
Muga scan, NVO?, EKG, Pulmonary function test (no caffeine)
March 14 starting 10:30 am - 2:40 pm
prep instructions, CT Scan
My substitute should visit school sometime around the end of the week to see how it all works and answer any questions.
March 18th I start medical leave; another Easter play practice ...the rest is yet to come.
At least today is over...almost.
I was hoping Gil might pick up Dani so I could go for a run, but he had a lot going on: His dad going to the nursing home to visit mom, a run thru of the Easter play at church, including setting up a black-out curtain, and then meeting up with a friend of his from Tallahassee (Hi Alan!!). So when I got home I went for a run with Snoopy.
I had been waiting to hear about Dani's new family, and when on the third lap around Datsko park, I let Snoop off leash for a bit. That's when I got the call...and snoopy disappeared. I had just passed a dad carrying his kid on his shoulders and I think the extra large person scared snoop and I was on my phone about Dani's new family and didn't react quick enough!!
After freaking out for about 20 minutes, wandering around the park, calling for him, asking if anyone had seen him. Called Gil, got him all worried too. Finally called Danielle and asked her to take a look outside and within minutes she called me back...he was home.
I didn't record how fast I ran home, but it was fast, I think. I just know I was so happy and relieved when I opened the door and Snoopy greeted me. Dani was kind of funny. She said she opened the garage door and he charged at her from the neighbors yard. He was so happy to be home...and I was happy when I got home and he was there safe & sound.
Finally, got our lead on Danielle's new family. It's been a while coming, but it looks like we finally have a home. We will be moving her tomorrow evening. I have 2 meetings tomorrow after school so Gil may have to do the move. That will make a busy day for him after day full of appointments at Moffitt.
Otherwise we are doing fine. It's going to be a busy week as Gil starts his organ testing this week, plus all the Easter stuff starting up.
March 11: easter play; experiment with blackout screen
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?); Hopefully we'll find out about housing at this point and I'll get with our potential house sitters; Move Dani ??
March 13 starting at 8:30 am - 11 am
Muga scan, NVO?, EKG, Pulmonary function test (no caffeine)
March 14 starting 10:30 am - 2:40 pm
prep instructions, CT Scan
My substitute should visit school sometime around the end of the week to see how it all works and answer any questions.
March 18th I start medical leave; another Easter play practice ...the rest is yet to come.
At least today is over...almost.
Monday, March 04, 2013
Good news!
Gil got the results from his PET scan. All nodes are gone except his tonsil which was 2.5cm is now 1.7cm - nice reduction. We are very, very happy with this!
Dr. Ball was also surprised to hear that Gil had an easier time with this chemo than the previous one 7 years ago - this was harsher, but either the Emend anti-nausea drugs were very good, or he just was very blessed. The roughest time was chemo week - days 1-10.
Also, looks like Danielle may have a new home as of this week.
Nice to get some good news for once.
Dr. Ball was also surprised to hear that Gil had an easier time with this chemo than the previous one 7 years ago - this was harsher, but either the Emend anti-nausea drugs were very good, or he just was very blessed. The roughest time was chemo week - days 1-10.
Also, looks like Danielle may have a new home as of this week.
Nice to get some good news for once.
Friday, March 01, 2013
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...
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...
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