Finish the Drill

Learn something new every day.

So, I'm still struggling a bit with the whole appetite and taste thing.  Sooo much better than when I first got out of the hospital, but for a foodie, it is still driving me nuts.   I was speaking with a friend of Melissa's today, Dawn.  Some background for you- I have learned first hand that your sense of taste is definitely involved in your sense of smell.  When your taste buds are screwed up, guess what happens to your smell?  Who would have thunk it?   Anyway, smells that I normally love have been brutal to me.  Garlic being the main one.  I digress.   I was explaining to Dawn today that I was very pleased that I woke up this AM and the smell of coffee was actually a pleasant smell.   I told her that although it smelled great, I have not tried any yet, because I don't want to screw up my coffee for later days.  If I try it now and it sucks, I may not like it when I'm back to normal.  Kind of like chicken soup.  Probably the best tasting soup I've ever had when I was sick is now something I am probably going to stay on the other side of the roof from.    Being the brainiac that I am, I was shocked to learn that there is a scientific term for this.  why Dawn knew this, I have no idea.  She said "Oh, that is classic Conditioned Taste Aversion" as if this is a normal part of her vocabulary.  She is a designer, I don't know why she would know this.   Long story short, I told her I would look it up and see what it is all about.  Well, she saved me the work.  10 minutes after she left she sent M a link for it.  Check it out- she is right.  It is scientific shit.  Pavlov baby!  GO HERE

On the recovery front, all is still going well.  I am set to get my central line aka DVD Plugs out on Friday.  They told me today that the bag of fluids I got at clinic this AM should be my last- ever.  My platelets are still low, so I am expected to get a bag of plates on Friday AM before getting my line out.  After that, if I need any fluids, plates or whatever they will do it via a normal IV.   This is awesome freakin news, but the downside is that I'll be getting a needle stick every time I go to clinic after Friday so they can draw labs.  I'm thinking after all that I've had to do the last 6 months, I can handle it.   Oh, I also had a house call from my Chiropractor today.  Good stuff.  One tends to become very stiff with little to no activity and laying around all the time.  He's a great guy.  Not many folks around these days that will provide that kind of service.   SIgning out. 

Hey All!
Just a quick posting to let you know Jeff is doing very well.  As he mentioned in his previous post, he is pretty wiped out, but we can deal with that over pain or nausea!  He is able to eat much more which is probably part of what is making him so tired.  Takes a lot of energy to digest food!  He is still only eating: Egg McMuffins, orange juice, a little water, some flavored water, some sandwiches, grilled cheese and frosted oranges from The Varsity.  That's about all the variety he can handle right now.  Oh, and chicken friend rice worked this week too!

The doctors are really pleased with his progress and one of his mid-level nurses even mentioned he might get his port out next week.  We both almost passed out!  That would be HUGE.  The port makes him nuts, it is just always there, itches and of course, he can't workout much.  Don't think he'll be doing many pull-ups once it is removed, but at least it is an option then.

Thanks so much for all the comments, prayers, support, meals, dogsitting, cards, games, errand running etc!  You all are wonderful and so appreciated!  M

Today's pic: Spike (aka: The Cancer Dog) in his normal healing position.  I have to say, he really does help Jeff! 

Getting better every day

Its been several days since I last posted.  Really not too much to report.  All is well on this end and Melissa is still as much of a goddess as ever.  She is simply the most patient and hottest caregiver ever.  She rocks!  I know it gets hard for her to "go get me a glass of water" or "can you fix me some soup?"   The good news is that things are simply getting better day by day.  My appetite is on the mend in a big way.  I markedly feel hunger and food is tasting better.  I ate 2 egg mcmuffins this morning before 9AM.  A big breakthrough, as my daily breakfasts have consisted of 2 frozen waffles and a popcicle.   I'm pumped that I can eat some real food now.   I have had a few plain burgers and grilled cheese is also a winner. 

Physical recovery keeps on progressing as well.  We are thankful everyday when we see my lab report and see that my counts are getting closer to normal each day.   Things are going so well on the recovery end that the doc has decided to give us a couple of days off from clinic over the next week.  We are very excited about this for sure.   The energy part is still pretty tough on me.  The best time of day for me is the first 3-4 hours after I wake in the AM.  After that, I become pretty fatigued.  It is usually around that time that we are wrapping up at clinic.  When we get home around 1 or 2, I hit the couch for the afternoon.  I usually come back around about 5 or 6 and then crash again for bed time at 10.  Tough schedule, I know.   Trust me, I'm dying to have more to do and to be able to do it.   I guess that is about it for now.   Oh- only a week and a half for CFB season to ramp up.  I'll have a TON of time on my hands to keep up with everything.    If I'm lucky, I'll be able to get my ass in the UGA/UF game at the end of October.  I keep telling myself that anyway. 

Back to the grind

Thanks to everyone for all the posts the last several days.  The positive energy keeps me up.  I really appreciate hearing from y'all.  It's also great to let us know what you are up to as well.  I feel like I've almost been cut off from the world since all this started up. 

Just wanted to post up today to let everyone know things are pretty much back to "normal".   That is, if you consider normal getting up and hanging out in a cancer treatment clinic for 6 hours a day normal.  Unfortunately for us, it is.  At least for a little while longer.   We are pumped everyday when we leave here knowing that it another one behind us, and one closer to the end.   My body is fighting constantly for an early recovery and discharge.  If I were a betting man........

The eating has gotten a bit better.  I'm able to eat solids without a problem.  Its just hard to find something that is appetizing enough to eat.   My tastebuds are still dead, and nothing has any taste.  Its really weird to go from a food obsessed individual to food adverse almost overnight.  I'm told it will come back soon. 

OK- thats enough randomness for now.   Fighting to see everyone soon!

A lesson in blogging!

Over the past few weeks so many of you have mentioned reading and keeping up with this blog.  I am so grateful for all of you keeping up with all of this!  I almost always end this conversation with you mentioning that you should "comment" on Jeff's blog!  So many of you look at me with blank eyes, or sometimes even fear!  I am realizing many of you don't know how to comment!

Believe me, I had no idea what a blog was or why anyone would waste their time on one when I first heard of them a couple of years ago!  Why wouldn't you just email???  I was very confused.  I have come to understand the value of The Blog and I am now so grateful for this forum.

Anyway, if you take the time to read this post, or any in the future from Jeff, please take an extra couple of seconds to say "hi" in the comments area.  It really, really, really entertains Jeff and he is going to need all the entertainment he can get over the next few weeks!

So, here are the instructions for leaving a little note for Jeff.  At the end of each post you will see a line that looks like this:

Posted at 01:04 PM | Permalink | Comments (4) | TrackBack (0)

To leave a comment, click on Comments, enter your name and email address (will not be sold to advertisers), leave a quick note, then click on Post.  You will then be asked to enter a code to finally post the comment.  All this does is tell The Blog you are not an automatic robot leaving nasty comments on The Blog.  (We can have another lesson on what that means in a future blog :))

So, update on Jeff:

This has been his best day ever!  Well, it seems like it to him.  He has been completely removed from his pain med drip and is in little or no mouth pain.  He was able to break his fever on his own....very big deal....and has kept his temperature normal for the last 24 hours. 

He has been a little on edge all day...probably due to being on morphine for almost a week and has been in a constant sweat (known as an engrafting fever..not sure if i spelled that right).  Means he is a bit feverish while his cells grow and take root. 

He had 4 neutraphils (again...spelling) this AM and had 440 a few hours later.  These big changes in his white cell counts are why he is feeling so much better.

This last week has been the hardest thing either one of us has ever experienced.  Absolutely unreal.  He is a real trooper though and is doing his best to stay positive through all of it.  He amazes me.  We are both probably still in shock and probably will be for awhile...but we are both so glad to be on the other side of this whole procedure.  While the next few weeks will be draining...we are so, so, so grateful to be healing as opposed to waiting for another chemo!  We are very content knowing he will never, ever, ever need another dose of chemo...EVER!

Thanks again to all of you! M

Today's pic: Jeff's favorite and pretty much only food for the past week!  From what we hear, many patients can't eat on their own when the mouthsores get really bad.  Jeff was able to suck down these shakes all week and now it is all that sounds good to him.  Still no real appetite or taste buds...kindof have to push him to eat....

Almost there

Tomorrow will be a full week since we got here.  Certainly the longest stint I've ever spent in a hospital.  Great news is, I think we'll be out of here tomorrow when the doc makes his rounds.  In order to leave, there must be no fever for 24 hours and no sign of infection.   I think I'll pass with flying colors.  Starting yesterday, my blood started to show a neutrophil count...... which means, my replacement stem cells have engrafted and I'm on my way up!  I've been without fever since yesterday afternoon, and my counts are steadily rising.   

Sorry there havent been any updates the last couple of days.   It has been ruuuuuff.   With getting just the standard chemotherapy dose, I was only familiar with what most folks feel as fatigue and sickness from the juice.  But now, holy cow- I can honestly say there is another league.  I almost already have no memory of how ill and how much pain I was in the last few days here.   I have a whole new respect for this process, and anyone who has gone through it.  I hear some in the clinic talking about it being their 2nd or 3rd transplant.  Good thing this will be it for me. 

I'll check back in when I am released from here and back into my routine of going to the clinic every day.  Thanks for listening 

My little home

Day 4 in my new little home.  All is about the same.  Still fighting the fever- it hovers around 101-102.  I haven't seen any more temps in the 103 range.  Which is OK by me.  Doc thinks it is the mouth sores causing the fevers, but has not been able to identify any bacteria in the daily blood cultures being taken.  He thinks regardless of what it is, my fevers will subside when my counts start to recover over the next 3-4 days.  It is at that point they will kick me out of here. 

Its not so bad.  They have me walking 27 laps a day around the unit as a prescribed activity.  Which I think it is fantastic that a doctor is even forward thinking enough to prescribe exercise.  I had more platelets last night, and am lined up for 2 units of blood and platelets today.  Bring it on.  The super strong platelets I have been getting are turning me into SuperPatient.  I swear it makes a difference. 

Another cool thing is that i have been able to stay 100% in the zone while I have been here.  Since I have the nasty sores, all I can eat is liquid food. So, guess what that has been?  I'm eating about 4 or 5 zone shakes a day.  For some reason, they are delicious and I can't get enough of them.  As weird as it is, I really think staying in the zone while in the hospital is helping my energy level for sure.  See ya'll

What a difference a day makes

Well, I've said all along that this whole journey would be one big roller coaster ride.  Very true.  As low as I was yesterday with the fever that peaked at 103.7 and the uberpainful mouth sores, I feel like I'm back on top of my game today.  I still have a low grade fever- around 100, but that is totally normal right now.  The mouth sores are still around, but ever since they hooked me up with a pain button, it has gotten so much more bearable.  Today is a great day.  Melissa and I walked our 27 laps around the BMT unit today (equal to 1 mile.  Doctor prescribes it every day)  Yesterday, it was a no go.

I am to start on the Neupigen shots today, which is a white blood cell production stimulator.  Doc says as soon as some of my counts start to recover, the sores in my mouth will disappear. Oh- thanks again to everyone donating plateletes on my behalf.  I got another fresh load today.  Thats it for today.  More updates to follow. 

Pick an antibiotic, any antibiotic!

As we left clinic Monday, Jeff had a temperature of 99.9 so we knew we were probably just going to get home then turn around and head back to the hospital.  He peaked at about 101.3 and Dr. Holland had us check into Northside.   We settled in nicely and he has been hanging in there.

He is in a lot of pain due to the mouth sores, but the new pain meds are helping.  He has his own little button he can push for more pain medicine...makes him very happy!  His temperature remains a bit high, he peaked at 103.7 today and had to have bags of ice on him to get the fever to go down.  It did eventually to 101.  He is still feverish but we are very hopeful for a normal temperature as we wake up tomorrow! 

Keep sending "normal temperature" and "happy mouth" vibes his way.  We are so grateful to all of you for all the help especially to everyone who has been doggysitting for us.  Big thanks to Grant, Jeff's dad for giving me a shift break today!  Poor Pat & Grant now have BOTH of our kids....wish them luck!

Thanks again to all of you donating platelets, so nice of you to give up your time to do so.  Hope you all are well and looking forward to seeing all of you when we are outta here!  M

Duex

We are winding down from day 2 post transplant.  Everything thus far has been pretty un eventful.  I have to be at the clinic every day at 7AM for six hours to get fluids and such.  Not much room to get into trouble there. 

My counts are steadily dropping, as evidenced by the lab report taken each AM.  I'm still close to the low end of normal range though.  Doc says I should bottom out by Thursday.  I feel fine so far.  I've developed a nice little mouth sore in the back of my mouth behind my teeth on one side.  It's no fun.  The mouth sores are normal and I'm told will get much worse as counts drop.   My taste keeps going further and further away too.  About the only thing that makes me happy right now is ice cream and protein shakes.  It will probably be that way for a while until my mouth clears up and I start to get my taste back.   At this point, it is just a waiting game. 

Thanks so much to everyone helping out and donating platelets at the clinic.  That is so huge- a real testament to the friends that Melissa and I try to keep.  You guys are the best!  I'll check back in after a couple more days.  Cheers