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