Waiting...

Wait on the Lord : be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord. (Psalms 27:14 KJV)

This has been a year of waiting. Right before Christmas last year, Gil had surgery to remove a suspect node from his neck. On January 2nd we received the news that it was positive for the second time with Hodgkins Lymphoma. Recommended treatment was several rounds of chemotherapy and a bone marrow transplant. We had an exchange student living with us from Norway. Danielle had already been pulled from one house, and now, after letting her know what was going on, she wanted to move again; We had to wait for a new family to be found. 

1/5/13 We haven't even really started anything and I already have moments I really find it hard to keep it together. During a nap (gotta love vacation time) Gil started crying in his sleep. It was very brief, but it really bugged me. no crying...not allowed...I was strong last time, I can do this again.

I don't know how to begin to tell you what a waiting game cancer and chemo is, unless you've been there. You're always waiting...for the hair to fall out, the sickness, loss or change of appetite, appointments and tests and more appointments...but life goes on....

Before things even started, Dani & I had a small car accident, then as Gil started his chemo, his mother had a series of strokes, light problems at church abounded, I was dealing with stuff at work, lost the dog during a run, Easter, finding Dani a new family, a set back with his treatment, another month of treatments, a near mistake in Gil's treatment, the Boston marathon bombings, arranging for house sitters, birthday's...all while waiting for the next step in his treatment – moving to Tampa for a stem cell/bone marrow transplant.

Before the transplant, the Doctors told us what to expect. The booster shots to get the cells to grow; harvesting the cells; conditioning chemo; that he would get sick, what signs to look for and when to admit him to the hospital; how the worst of it will hit and last 5-7 days then it will get better. That was the hardest part – believing that once he really started getting sick, that it would be like the flip of a switch. I didn’t completely understand until things started to take place. I thought it would be 5-7 days after the transplant that things would get better – I thought, at the time, this was a breeze – but it was at 5-7 days after the transplant that he hit the wall and became really sick and was admitted to the hospital.

Everyone says it was probably for the best, that I didn’t have to deal with the worst of it. I suppose that’s true, but it was hard watching him be so sick and waiting for the change. But I had a peace about it. I trusted the doctors, and I trusted God.

…the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (Phillippians 4:7 NRSV)

Sometimes, when we wait and pray, things don’t always go as we hope. As we waited for the transplant to take place there were so many other things that happened, so many distractions, but we had to keep our eye on what was to come. We had to know that God would see us through. While Gil was in the hospital, I tried to be patient and wait. Everyday I would go to the hospital and check his stats – “Is it today? Is there a change?”

There are so many stories in the bible of disbelief and impatience: Sarah rushed into creating an heir for Abraham, not believing she would ever actually bear a son after such a long time. A whole army had to trust in a boy to take down a giant threatening their lives. And who would believe in a virgin giving birth? Sometimes trust has to supersede our beliefs. I believe it is called faith. 

No matter what happened, I knew God had a plan. I had to trust and wait.

You will keep in perfect peace those whose minds are steadfast because they trust in you (Isaiah 26:3 NIV)

Gil's body suddenly started to improve - everything did eventually happen, just like they said it would. God took care of us, just like he said he would. The doctors were, and continue to be, thrilled at his progress. We still count our blessing and thank God for the year we have had – hard times and good times. Gil is still healing, working too hard (me too, I think), and living life the best he can. In November, we had a great thanksgiving with the good news that there were no continuing signs of cancer after having his tonsil out. Things have been improving! We continue to trust in the Lord – what ever His will may be we will wait and trust in the Lord.

A HUGE thank you to all our friends & family for being there for us. You are all God's angels!!
Happy New Year - Trust in the Lord to take care of you! 

Trust in the Lord with all your heart,
    and do not rely on your own insight. (Proverbs 3:5)

“When you call on me, when you come and pray to me, I’ll listen.
When you come looking for me, you’ll find me." (Jeremiah 26:12-13) - Thanks Chris Hall!

And if I sound a little religious - after this year, can ya' blame me??

Epic high 5!

How appropriate that Gil had his follow up today - the day before thanksgiving? Starting off our week with the Women's half marathon, we had Gil's day of exams, tomorrow is turkey trot and 'vacation' in Pt. Charlotte with Mom & Dad Horton and my Sis, Sally. And what a celebration it will be!

All of the nodes that Gil had as of his last exam have resolved. There is a question if the tonsil really needed to go, but I'm kind of glad they did take it...I'd rather it be gone and in question than be there and still in question. I'm pretty sure the good news will over rule the pain of all the vaccinations, but I think he may feel icky over the next few days. 

As with all things cancer, the check ups will continue for a while. His next visit to Moffitt will be on his Phoenix Day, May 21st. (Well, unless I do Miles for Moffitt on May 10th - anyone wanna join?). I know he has a visit with his regular oncologist on Dec 12th and I assume they will continue every 3 months or so for a while.

So all is well!! Yay!

Good News!

Gil had his tonsil - only one - taken out Wednesday, Sept. 18th. Dr. said they looked around and there was nothing in the throat that looked suspicious, even the tonsil really looked normal, but they would biopsy it and we should hear back in a few days. 

Gil was a little out of it that day, but the next day, he got up, took some meds (about a 1/3 of the prescribed dose), ate some breakfast and was talking up a storm. Outside of some obvious pain in swallowing, it was as if nothing happened! Well, he did eat cautiously the rest of the day...pudding, milk, eggs, and such. He would take small doses of the pain medication (hydrocodine/acetaminophen liquid) to eat, and a full dose to sleep. Friday he tried to sleep without it but it was a bit too soon and that set him back a little. 

We stayed home from church Sunday, but by the Wednesday he went to work and that night seemed to make a big difference. The next day he felt real good and has been without any meds since this past Friday. He is still being careful about the food he eats, staying away from fried, hard, or crunchy foods and spicy foods. 

We didn't hear from the Dr. About the tonsil for a week after the surgery, so I called the office to follow up. They called the next day and - yippee - no sign of disease!!! So I guess we are just back in recovery mode. Next, Gil has to meet with all three doctors, the ENT who did the tonsillectomy, his oncologist, and our general practitioner. After that, the next series of scans is in November, right before thanksgiving. Hopefully all continues to progress well!!

Tonsillectomy anyone?

Ok, so a few things have happened since I returned to work.
Gil had a follow up with Moffitt on August 21st. After being poked, prodded and scanned he met up with Dr. Ayala to find out how he's doing. Turns out that darned tonsil was enlarged again! From 7.5 to 11.6 (cm?...mm? don't know the unit of measure). And also 5 slightly enlarged lymph nodes in the chest. He was told it's something to keep an eye on, but the Dr. was not too concerned about it. Or so it seemed.

He had been coughing a lot, so they did give him pneumococcal conjugate vaccine to prevent a type of pneumonia that is common with stem cell transplant. After 2 days of a very sore arm, we noticed the coughing let up and the low grade fever he had been dealing with in the afternoons had stopped. I am hoping that has changed something! We will know a little bit more on that after his next follow up in November - which, by they way, will include a host of vaccines. Yup, he is starting the vaccination train the day before thanksgiving!! Yay!!

In the meantime...He had an appointment with Dr. Ball yesterday (9/5) and she's not real happy about that tonsil. How frustrating is it to treat this repeatedly, just to have that thing flare up again? Well, frustrating enough that he is going back to the ENT, Dr. Hood (that was today 9/6) and it looks like he have a tonsillectomy scheduled for Sept 18th. Finally looks like they are going to take this thing out and get a good look at it. Even the Dr. said it looked like he should have done that back in January after all.

So we feel like we are in a purgatory of sorts. Not sure if he is cancer free or not...did the stem cell transplant work or not...are we going to have to do this all over again (please, Lord, no!!)

His numbers are still doing well, although the white cells took a little dive in the last two weeks. And he's feeling pretty good these days; no dizzy spells when bending over or fever/chills late in the day.

I'll probably post something on the 18th after surgery.

back to school

It's time for the babysitter to go back to work.

Gil has started to sprout hair, and are having to shave on a regular basis now. I think he is pretty happy to see if coming back. He has had a low grade fever for a few weeks. It's bothersome, but not sure if we need to be worried or not. He tires easily, but his endurance is up a little. He has a follow-up at Moffitt Aug. 21st, so hopefully we will know more. Otherwise things seem to be going very well.

Jason visited for a couple weeks. That was fun. We went to Clearwater Marine Aquarium to see Winter the dolphin; it was PACKED, a lot more than when Sunset Sam was around! We met up with the Hano's, Jason's first family. It was interesting to share all of the stem cell stuff as Vicki Hano had gone through it earlier this year. I went with Jason to the Buc's night practice at RayJay stadium and he went to a Ray's game and regular training camp with the Hano's.

But alas, all good things come to an end...as summer ends, I have to go back to work. So this last week I have been at work preparing for students to return to school. I'm still not sure I'm ready to start getting up at 5am again. Monday was hard being at work 'cause I was so used to be around Gil and worried about him, which, of course was quickly eclipsed by all the meetings, requests, and prep work at school. Gil did do District Wide training with the Pinellas county school performing arts - all went well there. He has been pretty active at church working on lights and I've started helping out with youth on Sundays too.

Well, it's been an interesting summer, should be an interesting school year.

return to the dog park

Well it's been a while. Things got a little crazy around July 4th and I just didn't get around to an update.

The week of July 4th Gil had been working on some ideas to make the church sound a little better as well as getting a sound system ready for our truck in the Temple Terrace parade. By the end of the parade, I think he had pushed himself over the top. There is a fine line for him between exercise and rest and July 4th, he crossed that line at that time.

But it's ok. He recovered nicely. Last Tuesday, he made his return to the dog park with Snoopy (and without me). There was a lot of water at the park so Snoopy had a blast. Unfortunately the mosquitoes are getting vicious and Snoopy was having so much fun, Gil couldn't leave after 2 laps and went for a 3rd - pushing the line again.

He was tired and sore for a few days, but recovered once again. His white cell count continues to go up slowly, but some other areas took a little dip - not enough to require a booster or cause any great concern, but enough to question the balance of rest and exercise.

Gil is continuing to do very well. He's a little frustrated by the dry skin and the fact the hair is not coming back as it had before - he does have a little pencil mustache and almost a 'soul patch' that he has to shave about once a week. He has some fine hairs on his head that only show when the light is right, a bit of sandpaper on the head, but nothing like he would hope for.

Well, this week I'll be leaving him for a bit to visit my folks. I think he can do with out me for 3 days ;)
Oh - and a good friend of ours who happens to write for a paper did a nice little piece on Gil. Check it out: miracles-at-moffitt-mean-more-birthdays

so close...

Progress is slow, but the number are still going up and Dr. Ball is very happy. Gil seems to be feeling better, not getting as winded easily.  (hopefully formatting stays)
          6/20     6/27    normal
WBC  3.0       3.3       4.2+
RBC   3.96     4.25     4.3+
HGB  11.7      12.2     14+  This is the one that, when low, he get's winded.
PLT    165      256       140 - 440  necessary for clotting - YAY!

He walked 2 laps around Datsko park last week (about a mile) - it was a little rough at the end, but later that day we went to the mall and walked around before seeing a movie, and he felt good! Maybe we'll walk the park tomorrow - or maybe we'll just get breakfast, hmm....

Got a full day tomorrow as it is: Christian has his annual visit (after all we figure he's about 11 years old), and then we're gonna head south to Mom & Dad's for dinner. Next week is July 4th, so blood work will be on the 3rd, maybe the midnight run for me, and parade in Temple Terrace on the 4th - then we'll collapse for a while! OH - and Gil turns 50 on the 5th!!

not normal yet

Well, of course, our normalcy is called into question everyday, but in this case I am speaking of Gil's blood work.

Visited the doc's office for blood work yesterday. His white cells went from 2.3 to 3.0 this week with the normal range starting at 4.2. Red cells and hemoglobin are also just slightly low 3.96 of 4.3 and 11.7 of 14 respectively and platelets are UP...165, normal is 140+!!

Today he posted on FB: Well Facebook friends, got my blood tested yesterday. All my numbers keep going up. I actually walked a mile today, I'm tired, but I feel pretty good. Improving everyday, just keeping y'all in the loop.

It's getting there. He's trying to get in some exercise when he's up for it, sometimes daily activities are enough.

Next week he will actually see Dr. Ball and I think she'll be real happy with his progress. Not sure when he will no longer be considered immuno-compromised, but we are taking everything one step at a time (little bit of ice in his drinks when ordering out).



This week was VBS at church, so I went on Monday to make sure all equipment was working and there were no technical difficulties, ran the computer for closing and the next couple of days. VBS is always an adventure. Next week ...who knows...hopefully we'll find some routine.

Home again, home again

It is SUPER nice to be home! A little idea of how good it is...a little video of Gil's homecoming.

June 11th - It was the best birthday present I could have. Home with my hubby, my 'kids' and my own bed!

Gil had the central line removed Monday so Wednesday he got to take a 'real' shower, as he put it - no taping and protecting the line. Went to church Wednesday night for practice.

We went to Dr. Ball today. Thursday June 13th; His numbers are going up today (his white cells were at .65k when we left Monday, and are at 2.3 k) - still low but he is really impressing the Doctors.

Although we're getting back to our routine, somethings are still in adjustment - cleaning, playing & taking care of the animals, lifting - Gil tries helping out, but he tires out very quickly but he is growing stronger everyday!

Dr. Ball will be doing blood tests every Thursday for a while to keep an eye on his numbers, make sure they keep heading in the right direction. In August he'll go back to Moffitt for a CAT & PET scan to make sure everything is still good (yay follow-up) .

As for me - it's summer break. Time to catch up on reading, paperwork, maybe some training (running, bike, swim), and sleep - sleep is always good.

There's no place like home!

+16

At day +16 he was deemed by the doctor as "boring".
Boring because he had nothing really going on. White counts dipped just enough again to get another booster, but no aches, no pains, no mouth sores, no more vomiting or diarrhea.

+16 and he is doing better than anyone has done before. He is also, it turns out, a bit of an experiment. He was the first to do this whole thing outpatient ...outside of his 5 days in the hospital with the a minor infection and the major effects of chemo, which 5 days is actually pretty good! SO if anyone goes into medical school and specializes in this area, you may read about him!

+16 and he is possibly cleared to go home, we just need to get the central line out. Depending on how and when that is scheduled, I may be the best birthday present ever - going home with my hubby at my side!!

+16 and we just got a call about taking out his central line Monday, June 10th (+20). Not even a month after his transplant. How cool is that??

OH - and by the way, his baby immune system will need a series of immunization shots all over again. Didn't think about that, eh?

continued recovery

Recovery continues. Monday Gil got another neupogen shot as his white blood cells took a little dip. His digestive issues seem to have passed. Food is tasting better and he is eating whole meals (although not a lot at one time). Blood pressure is running low (87/58 ??), but seems to be coming up (96/64). I know it has run low for the last 7 years - after his first round with hodgkin's. Everything really seems to be going well!

So...we are waiting on more blood tests to see how close he is to normal ranges, to actually see the doctor (tomorrow), get the central line out, and be fully discharged - or at least allowed to go home to Clearwater. After that, we still have to wait for clearance for him to start driving and working again - that may be 3 months down the road.

I do feel we have been very fortunate.

#1 he did auto - less rejection, higher success & quicker recovery than allo (autologous (aw-TOL-o-gus) and allogenic (a-LO-jen-ik). ~ http://www.nhlbi.nih.gov/health/health-topics/topics/bmsct/)

#2 we were able to stay near home by going to Moffitt here in Tampa (not Gainsville or Detroit Michigan or ....not sure where else they do it)

#3 He was allowed to do all his chemo out-patient (a first, from what we understand) because...

#4 we have had such great support from work, church & my run group - best cheering sections EVER!!!

#5 when things got bad, he was able to stay in the hospital where they gave him the fluids, electrolytes, and other meds he needed in a controlled environment - I think they did better than I could have done at the hotel and I would have been freaking out!

#6 we were near 2 nice running loops, so when I needed to, I could take frustrations/helplessness/stress...IT out on the road; it also gave us nice places to walk when he was able.

#7 after the hospital, our appointments changed allowing us more morning time and the occasional day off.

#8 Gil lost some weight (about 8 lbs?)

I'm sure we can come up with some other 'benefits' - not the vacation anyone would really want, but it could have been worse.

Cheers!

As bad as you are, you know how to give good things to your children. How much more, then, will your Father in heaven give good things to those who ask him!
~~ Matt 7:11 

BoUnCe

If anyone ever get's a blood or marrow transplant, let me tell ya now - it's 6-7 days after the transplant that the chemo will get ya'.

His numbers are up and so is he, so to speak. (we are at +11)

We just got back to the hotel after Gil's 5 day stay in at Moffitt. Energy is real low, hair is falling out, and his digestive issues are getting under control.

But his blood is reproducing as expected:
White BC hit a low of .05k to, now, .99k (normal range 4.0-10.9)
Hemoglobin is up and down, low of 10, highest was 11, down today to 9.4 (range is 13.4 - 16.9)
Platelets keep fluctuating lowest was .7, currently at 18...below 10 he gets an infusion (he's had 2 so far - day +6 & day +9).
Neutrophils are up to .55k from nothing (range 1.8-7.8), I guess these are important buggers for the immune system 'cause that is the one they watch to let us know when he can resume normal activities...and to what extent.

Now, the other night my mom asked me a tricky question: How do we know if this all worked?

Are you asking was the transplant successful?  His blood is reproducing, for the most part, so I would say the transplant was a success. Very high success rate with Auto transplant anyways because it's all your own cells.

In the way of curing his cancer? They wanted him in total remission before they started, so technically cancer free as of the beginning of this transplant process. So it really didn't cure the cancer itself, but should prevent him from ever having Hodgkin's again. There is a possibility of another form of cancer somewhere down the line - but only as much as the next person.

So WAS it a success? I guess we'll only know if he never has Hodgkin's again!

All I know is I hope he continues to bounce back. It should be about 3 months before life returns to normal - about a year for complete recovery. For now, we are still in Tampa till June 6th at the earliest, June 13th at the latest.

Bump

OK, so Monday ...He got platelets Monday morning. He wasn't feeling real well Sunday night, so I was really hoping the platelets would help, but, alas, as the sun went down his temp went up. It didn't stay there so we were in flux - do we call or not? do we stay and ride it out or go to the hospital?
At 100.5 we were supposed to call - it had hit 100.8, but went right back down to 98.7 (NOT radio stations here, kids). We called, they said try taking it again in about an hour. So about an hour later...99 ...few minutes later...101...a minute later 98.9...We called again and they decided to admit him.

They found some signs of VRE, an occasionally naturally occurring bacteria - some people have it, some don't, some are carriers...doesn't always make ya' sick. So special antibiotics by IV. The fever stayed down, and by Tuesday, the bacteria went away, but he definitely was not feeling better. Started the neupogen shots on Tuesday...thought we'd see some improvement Wednesday. Even a nice little prayer group from church came by and did some serious praying - I was sweating!

Today, Wednesday, I kind of see some improvement. When he's awake, he's pretty alert, but you can tell he is really nauseated. They've tried a couple of anti-nausea treatment...not much is working and they put him to sleep. They are also trying a motion sick patch because it happens most when he sits up. Basically he hasn't eaten for 2 days - lost almost 10lbs (not that we weren't prepared for that).

Although this is all fairly common and expected, no one likes feeling bad or puking their guts out. He's worn; really wants to eat something and have it stay down, let alone taste decent. This evening he had a vanilla milkshake. I'm sure it's not exactly your run of the mill milkshake, but, as of the time I left, he had managed to keep it down! YAY!

He had another neupogen shot today (these are white cell boosters), and his platelets were low (10) but not low enough for an infusion, so we'll see tomorrow morning about that. Hopefully all this is a very minor bump in the road and we start seeing some improvement tomorrow.

Hooray for the milkshake!!

Mile 18 ?

Almost like a newborn baby, Gil's immune system is pretty non-existent.
White blood cells at .07k  (normal 4.0 - 10.9)
Platelets @ 31k (143-382)
They haven't listed the neutrophils (a type of white cell) for a couple of days now - probably because there aren't any (Neutropenia). Until those come up to about 500k he has to be on antibiotics.
Also all the chemo effects are becoming more apparent - but we won't go into those. All I can say is Gil is feeling pretty sick (but he still has his hair so far).

Doc wants him to walk about a mile a day. That's getting harder everyday, right now. His ankles and calves hurt, his hands and feet are cold, wearing a mask outside all make it very hard to get out and walk, but the warmth does him some good. Hopefully this won't last too much longer.

By next Tuesday, things should start improving a little bit. He will start getting neupogen shots again to give his cells a boost. By next weekend we should be seeing some real differences. It's getting hard to hold on. I guess you could say this is about like mile 18 or so in a marathon....your not sure, but you gotta finish!
 

...and a time to heal

Or as Gil calls it, the Rise of the Phoenix, but since I've been going with Ecclesiastes 3 and the forest fire theme...

The fire has burned out leaving very little in it's wake. Some seed, some re-planting and wait for the earth to regrow.Waiting for the return of new, green growth in the scorched ground.

It is day 0, Transplant day, and a day to celebrate. Gil's cells are returned and we wait to see how he heals. This is also the very vulnerable stage as he may react to the preservative used when freezing the cells (DMSO),  he has no immune system, and the chemo's effects are going to be at their worst for the next days. Then we wait for engraftment: The process of transplanted stem cells reproducing new cells. This should take 2-6 weeks, during which (and he already started) he takes quite the cocktail of anti-viral, anti-fungal, and anti-bacterial drugs. This engraftment process is very hard on the body...so we'll see what happens next.

Gil has breezed through so far, and I believe things will continue to go well. The hardest part right now is getting proper sleep - with long days laying in a hospital bed, showers and Chlorhexidine gluconate wipe downs, our normal timeline has been a little disrupted. But now it's all healing. Hopefully no more day's at the hospital - just quick check-ups in the morning!

In the meantime, have a party, celebratory run, or whatever...it's another Birthday for Gil!

By the way - had a little fun today visiting at church - I called Gil on my phone and shared a little FaceTime with the staff at TTUMC. That was entertaining!

Forever on my calendar - HAPPY PHOENIX DAY!

UPDATE: My RunVie team did a celebratory run for us - Thanks guys, you all are great!!

Can steroids make you diabetic?

Evidently, yes they can!
Since Gil has been doing chemo his glucose (sugar) levels have been going up. Normally right around 100 (below 100 is optimal), lately it's been up over 200! Learned today it's a steroid he had not had before and that it has properties that can affect the blood glucose levels, so Gil now has to be careful of his sugar intake and is being given insulin on top of everything else. Yay. Actually he just learned today how to check is levels and give himself insulin. Double Yay!

The Dr's are real impressed that he is handling the chemo so well.They want him to keep moving, keep exercising, so we've been going for short walks. He hasn't been sick at all, and hasn't needed to take any of the anti-nausea drugs. If only all cancer patients could handle chemo so easily. SO different than how it went 7 years ago - when he was allergic to one of the drugs.

Well, if you need a reason to throw a party, here's one. Tuesday is Transplant Day!! Yeah!
So throw a party in Gil's honor.

If ya really do we'd love to see pictures. We can also Skype or FaceTime if you want us there...sort of.

A time to kill...

The forest had old growth and now new growth that has been thinned out and set aside. FIRE! The forest burns for 6 days, burning down to the ground to the ground, killing all growth, snuffing out life...almost.

Minus 6: we count down toward transplant. Day -6 is the first day if chemo. BEAM: BCNU (carmustine)/Etoposide/Cytarabine/Melphalan.

Today was to be a 3 hour chemo (that evidently didn't include some of the pre-chemo stuff). The next 4 days will be 12 hours, 2 sessions with a break in between, and the last one, Melphalan (day -1 - may 20) is also about 3 hours.
That gives a whole new meaning to "2-a-days".

This also means keeping track of every thing that goes into and out of his body. Wiping everything down with Clorox wipes - CLEAN environment.

Mask whenever he goes out and about
Hot food kept hot, cold food kept cold, pasteurized eggs & milk, no delivery, no buffets, no deli foods....well, foods from a deli (like handled on a slicer that has sliced who knows what)

He got his little goodie bag today. A couple of plastic basins, box of masks, gloves, saline solution mouthwash, tooth brushes, thermometer. So much fun!

OK, all my athlete friends - quiz: What things here do you also hear with running/training/events?
(hint: there are at least 2)

Well, time for a walk. Gotta keep him moving - at least a little. 

And a time to uproot....

As the trees are planted in the forest grow, they must be thinned out. 

Just as they made the cells grow, today they collected them. About 9 hours on the machine and anther few hours waiting to see if the collected enough. So what did they collect? What is a stem cell after all? Well, in regards to blood...

Blood Stem Cells: Cells found in the blood that can grow into a red blood cell, a white blood cell or a platelet. (Also called hematopoietic stem cells)

It felt a little weird going about my day, in Tampa, away from home, not really knowing what to do without him with me. Not that I didn't know what to do...went for a run (I guess too short), picked up a few things, tried to take a nap, talked with mom & dad via Skype....just, you know...I'm here for him and its not really home. I still kinda feel like I'm drifting through all this. Everyone is so worried about us, but I'm kind of not...a little, but I know it really is under control, sort of...am I taking it too easy? I wonder if everyone else is ready. That's why posted on Facebook some of the words from "once in a lifetime" by talking heads 

"You may ask yourself, well, how did I get here? " 'cause I keep wondering that. I actually downloaded the song because it really fits how you drift through life and one day look around a wonder "what the heck is this?"...being taken out of the routine of life, it's more so.

I can't even really fathom what Gil is truly going through. I know he's hungry a lot of the time (when he's at the hospital for hours he tends to not eat), tired. But as for emotions, or mindset...he seems pretty stable, but he may be like me and just kind of drifting through this...like its all some kind of weird dream...a bad dream. 

Next...and then....

This morning started with an early wake-up, off to Moffitt for a very full day.
First 5 vials for blood work (7am).

Next - line placement for tunnel catheter (9am...actually we were a little early). 

Then, "What to know about outpatient transplant" & caregiver class and the question of will he be in-patient or out-patient (10am, although we were late from the surgery so closer to 10:30)

And then....A little snack, meet the PA @ 2pm and over to the treatment center for more information about his new 'line in'.

And then....Home for a snack and nap

And then....Back to Moffitt for his last neupogen shots (5pm).

And then off to CDBs for pizza!

Musical Mayhem in CDBs- Mexican music from the kitchen and pop music from somewhere in the dining areas. 

What's next? Back to our apartment and sleep sometime soon, I hope.  Apheresis tomorrow!

 

a time to plant...

Like a forest in the spring, all green and new, bringing forth new life, Gil has been given the first in a series of 4 shots to make the blood cells grow. In a few days they will harvest the cells needed for the transplant.

I guess this is it - the great adventure that is a Blood & Marrow Transplant. Seems all a little surreal now that it is really happening. I guess being put off last time kind of made it seem like things would change, that we wouldn't have to do this. But here we are at Residence Inn, Tampa and already paid one visit to Moffitt for his first white cell booster - Neupogen (filgrastim). 

It was hard to leave home. Hard to leave a big chunk of our life and our 'kids' in the care of someone else! Snoopy kind of figured it out. As we packed up the car he started hovering around Gil.  Gil was fit to be tied when we left - that's his pup! And to go a whole month without him is going to be near torture. 


It's a pretty nice room - 1 bedroom, queen bed & queen pull out, if we need it; kitchen with a full size fridge, 2 burner stove, microwave, dishwasher and sink. We have internet access, but Gil is having a problem getting the xbox to work online. 

Well, bring it on - we are here for the great adventure. 

"...For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future..."  ~ Jeremiah 29:11

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!

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.