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.