A day of fun!?

16 vials of blood today for various blood tests - they don't call it a mega lab for nothin' !

Talked to our lodging person and should have voucher for our room by Thursday of next week. Did that while we enjoyed a little snack at the Starbucks in Moffitt.

Psychologist entry interview, cognitive testing and met the Dr. Jones-Booth.
Gil did remarkably well on the cognitive tests - she even called him intelligent (not that I had any doubts). Did find out we had kind of gone through 3 social workers - 2 subs and we have yet really to meet the one assigned to Gil's case, but we've talked to her on the phone. Guess I had raised a few flags with our last meeting with a social worker - I did have a lot of questions, but nothing impractical. Hmmm.... Well I am glad Gil found out he is as intelligent as he thought he was. As for being normal? Well, normal is a relative term. HA!

Love, hugs a kisses as always, dear. :* 😘

Oh well - now to Dr Ball for a last round of blood work!
Although I wasn't able to get a pic of Gil & his mega lab, I did snap this shot of him at Dr. Ball's office, Fl. Cancer Specialists.

The Human Conditon

I keep thinking about the whole Boston marathon bombings and stuff a wonder: should I hate them for the damage done or thank them for uniting us all again?

I have never been a part of any major tragedies or had any great, huge life changing experiences (that I am aware of). My brother & sister were affected by the Northridge earthquake in California 1994 and in 2004, closer to home, hurricane Charley damaged my parents residence moving them closer to me which impacting Gil and I a bit. We had a minor fire in the house, but nothing was really damaged. I moved a lot as a kid, learned to fly when I was young, but failed at learning to land (once was enough). When I was young my dad had cancer and I learned quickly people don't like to deal with life & death situations, especially when you are around 13 years old; Break-ups are hard enough, who wants to deal with a parent on death door. (my dad is still alive, by the way - 91 years old now, WWII and 3x cancer survivor!)

Even though I found a deeper faith in Christ in college, I learned then that life goes on and as long as you keep moving, no one will really notice when anything is wrong; even if you stop for a moment, everyone has their own problems, they don't really notice or want to notice yours. It's cynical, but kind of how I've learned to live; learned to cope. We're pretty much on our own; God is probably the only one listening.

This is Gil's second go around with Hodgkin's. 7 years ago, the chemo made him pretty sick. His allergy to one of the drugs was rare and probably contributed to his overall sickness. The only real support system we had in place was family and church, but there were a lot of emotions to overcome and a lot of distance. A lot of people asked about his health and we had a pretty good tech team at church, but there were few offers of assistance. Life went on, we got through and here we are again, 7 years later...a different strain of Hodgkins and slightly different circumstances.

The chemo Gil started out with actually went pretty smoothly, considering it was supposed to be a more aggressive mix - 3 days on with one being a 24 hour drip, 18 days off, for 2 cycles.The first week of the cycle was the worst, but the rest a piece of cake! My run team has been super supportive, the coaches and others asking if there is anything they can do to help. Church has been more supportive with the pastor actually getting upset with Gil being at work at times. Even my parent's church, whose pastor is dealing with his wife's cancer, has been praying and supporting us!

When the bone marrow transplant was suggested, family and friends actually asked about donating. When the transplant got pushed back, everyone was very understanding - my sub at school, the girls that were going to housesit, the county (risk management?) and school secretary for having to change my family medical leave. Gil was put on a new 'designer' chemo that takes the wind out him, but we kept going.

Now, as we prepare for the second time to move to Tampa for the transplant, I've been blown away by the continued support. Mary Wilson, who was my sub, was supposed to start her vacation in May. She and her husband put off their vacation so she could finish out the rest of the school year for me. People at church are supporting us in various ways; offering housing, visitations, deliveries...

This has blown my mind. 7 years ago I was angry and upset at how little help and support we had; now we have more support than we know what to do with, but as we face the unknown with the bone marrow transplant, we may need it. Groceries, laundry, a moment to go for a short run (we'll be staying near Lettuce Lake park!), our Tampa family may be called on quite a bit. When we come home I'm not sure what kind of help we'll need, if any. We've heard best and worst case scenarios - be we won't know how we'll handle things till we get there.

Hope you all aren't totally 'prayed' out yet. I know this feels like it's been going on forever, but I'm keeping my faith and you all have helped me renew my faith in man.

I'm not gonna lie. As we face this bone marrow thing, we're a little scared. I try not to think about the 'what-if's', Gil can't help but think about them. We are dealing with it all one day at a time.

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!” (2 Corinthians 4:15-17 NLT)

Getting ready...again

Well, it's been a pretty busy week, but it's about to get busier.
Last week was 10th grade FCAT for me at work. 3 sessions a day, 70 minutes each...0ver 500 kids tested...and that's just the 10th grade class!
Gil has been busy helping is parents get ready for Mom to go home from re-hab, which happened Thursday April 18th.
My mom turned 84th Thursday, so Gil & I and the dogs all went to Pt. Charlotte for a birthday dinner, overnight at Banana Bay, and breakfast this morning.
In the midst of all this we got Gil's new prep-schedule.
Gil has chemo Tuesday, April 23rd, then he/we meet with the psychologist on the 30th, CAT scan & Dr. on May 1, neupogin shots start on the 10th and apheresis on the 14th. We have received a phone call from the social worker and they are arranging for our housing to start May 10th.

OK, all that aside.
I know from looking at the stats for this blog that I get a lot of traffic from overseas. I thought maybe I was making more of an impact than I was aware of, that this was helping someone overseas. I get all of the comments by e-mail as well seeing them here - but fortunately for you dear reader, you do not see all of the comments. The 'robots' for blogger do a good job of keeping the erroneous odd comments from showing up. It is really strange when you get a comment in very bad english and it has really nothing to do with the post being commented about. "aw, thanks [name]. check out my website..." or "to better do this, you should post pictures" on a post that didn't require pictures. All of these type of comments have a website attached. So annoying - why do they really bother?

There was one that did make me think - they were asking for advice on writing a blog. If that one is/was real - all I can say is just do it. I'm no expert at blog writing. I'd like to think my background of creative writing helps, but - mostly this is just for my family & friends to stay updated on Gil's condition and any other great adventures that come our way. If it really does help someone who is dealing with cancer or whatever in life - well, that's just icing!

love to all.
hmmm....maybe someday I'll start a story thru here. that could be interesting.

Rough week

The first 24 hours after Gil's treatment (Tuesday) wasn't too bad, but later Wednesday evening, after his booster shot, it started to hit - nausea, chills, shortness of breath, backache.
No vomiting and his hair is still growing, but his appetite and level of activity were definitely diminished.

He is sleeping harder bur is feeling much better today. We managed to put some dirt in the backyard to fill in where Snoopy had run ruts into the ground from playing.

My first week back to school was filled with a lot of surprised staff & students, and a lot of testing. I think they are glad I'm back for testing, because I was left with a lot of testing responsibilities (like I had a choice? It is in my room, after all). 8 weeks of testing - yay! Oh the places I could go with that, but that may be a different post.

Gil has a Dr. appointment Tuesday for blood work; I'll be curious about his white cell count. There is also an appointment at Moffitt for the Apheresis on May 14, which is sooner than I figured, but that will be based on his next CAT scan, which has not been scheduled yet. BUT one thing at a time....have to get thru his next chemo treatment first (April 23).

Acedris

So after a crazy holy week of a rental light board, power outages at church resulting in a true service of darkness on good Friday, and 3 services on Easter Sunday, we finally got a little down time Sunday evening. But, Monday it was back to school and "surprise" to many a student and teacher, and much explaining.

Tuesday, today, we started back at testing. Things weren't quite as prepared as I would have hoped, again. Today was also Gil's first turn with the new chemo, Acedris (aka brentuximab vedotin). So far so good; he's a little tired because they gave him benadryl with it as a preventative - it's a fairly new drug, so they were being proactive? Outside of being tired he has said his feet and ankles got a little tingly while playing with Snoopy outside and his head itches a little (well, the hair is trying to come back). I was going to take Snoopy for a short run, but it's getting a lot warmer quickly and he was willing to throw the wubba (dog toy) instead, so...

Moffitt seems to have started a schedule. We/he has an appointment for apheresis on May 14th. We'll see how it all fills out soon enough.

yet another set-back

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.

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!?

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. 😓

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.

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)

 

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.

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.

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!