Survived Camping!!

On New Years Day, after having gone to sleep around 2am, I got up, met part of my running team and did a virtual 5K at 8am.
On Jan 2nd, I went camping with part of our youth group. Now, I have been 'camping' - summer camp overnighter, boat, trailer, cabins, but not the stereotypical - tent-dwelling - sleep on the ground - s'mores making campfire camping.
We had a lot of fun, me and the 3 girls. Riding in the car together, putting together the tent, hanging out at the bathroom, in the tent, at the campfire, in break-out groups. We kept our tent warm when the weather changed from very wet to cold - VERY cold. I did not sleep at all but listened to them breathe and the wind blow, the lantern sway, and things crashing through the woods. The next day we were going to go canoeing, but with low waters and cold wind, it wasn't happening.

I did learn a few things...
1. if the youth director tells you to move stuff from the edge of the tent so it doesn't get wet, take his advice.
2. if you are offered a mat to put your sleeping bag on, take it. (I am to dang old to be sleeping on the ground!)
3. If you have a spare sleeping bag that is not wet, use it.  Damp and warm beats damp and cold any time, but warm and dry is even better!

We did clean out a lot of guilt baggage - burning them in the fire. So, What are YOU packing??

If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness. 1 john 1:9

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective. James 5:16

as far as the east is from the west,
    so far has he removed our transgressions from us. Psalm 103:12

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!