Finish the Drill

The drill has been finished!!!

First off, so sorry for the radio silence for the last several weeks on the updates.  There has really not been much to talk about.  Radiation was not much fun, but was not terrible.  During that time I have continued to recover from the Bone Marrow Transplant.    My energy is getting better and better every week.  I am back in the gym kind of regular, but gotta say I am completely humbled by my lack of ability to do anything with any intensity.  But, I know that will come back with time. 

The big deal is this- I had my PET scan today to tell me if the last 7 months of hell have been worth it.  They were.  My doctor just called to let me know he chased down the results for me early, and the scan is clear.  No cancer!!  So, I have shown that MF'er who is boss twice now and beaten him down.  Do you think he'll finally leave me alone?  I do. 

Thanks for listening to my rants over the last several months and for some of you over the last couple of years almost.  I am so happy to have a place to vent where folks are willing to listen.   That's it for now.  I have to go party my ass off now.  A new years celebration combined with beating cancer.  That should make for one fun night.  Cheers!!

BAM!

Isn't that what Emeril says when he is cooking?  At least he is not cooking himself.  I just finished up my 2nd week and  8th of 20-27 trips to the microwave for some rays.  So far, so good.  Up to this point, there have been almost zero side effects.  I got really tired one afternoon and today I am feeling just the slightest sore throat- which the doc said to expect since my esophogus is in the radiation field.  That part may get worse and time goes on, but nothing I can't deal with.  There should not be any nausea or anything nasty like that.  Just a little tiredness and some reflux.  Doc says I am good to do anything I want to do so long as I listen to my body.  Which I have become very good at by now. 

A little bummed I am not able to make it over to Baton Rouge this weekend, but am really looking forward to driving down to St Simons next week for the GA/FL game.  Whether or not I am able to make it to the game remains to be seen, but at least I'll be out of the house and near the festivivties.  Go Dawgs!

Long time

Whoa- I just realized how long it has been since I hit everyone with an update.  Sorry bout that.  I've been feeling great with energy improvement daily. Been getting in some long awaited exercise too.  Being sore never felt so good.  All is well. 

Getting a bit stir crazy feeling so well and not really being able to go into public spaces yet.  Almost there though.  I'll be rubbing elbows wih strangers again in no time. 

I'll begin the suntan portion of my treatment tomorrow assuming the final prep work gets finished up today.  I'll know more about the final plan today at my appt, but I believe I'll be getting hit 20 something times with a lowered radiation dose, which has been well proven and documented to kill off any remaining hodgkins cells.   I'm ready to get the show on the road.  I'm not expecting anything more than a little fatigue and a sore throat as I get into the meat of the treatments.  It is cumulative, so I don't suspect I'll have any side effects for the first week or so. 

Thats it for now.  I promise I won't be so long 'til my next update.  This one was so late, I almost forgot the user name I have set up for this account.  Sheesh. 

Another week in the books

Hi all.  So sorry for taking so long to provide an update.  Not too much news to report.  Bad weekend for the Dawgs- most of you probably know that.  Good weekend for the Hayes' though.  Things continue to improve slightly every day for us.  More energy and the like.  Oh, I also have some peach fuzz starting to sprout on my shiny head.  Yeah!  I have had to shave twice in the last week on my chin and upper lip, as some whiskers are starting to come back to life too.  One would never think they would actually miss shaving.  Well, I do.   It won't be long, and I'll be bitching about it again.  I'm looking forward to that day. 

I've had lots of chuckles over the last week as an old high school friend of mine, Dana, got me dialed in on Facebook.  It is crazy seeing so many old friends and what they are up to.   Almost scary seeing seeing some of it.  Kind of sad that I will have to miss my 20th year reunion this upcoming weekend.  I was looking forward to seeing old friends and tipping a few back with them.  Unfortunately, I've got about another month before I am allowed back into public spaces.  Probably better off, as I know the hangover that would result from celebrating with guys and gals I have not seen in 20 years.

We had our first appointment last week with Dr. Jonas since being discharged from the bone marrow transplant clinic.  He was my original oncologist.  Great group of folks there.  It was like going back home to see family.  Lots of hugs and atta boys when I went in to their office.  They were all very happy to see that Melissa and I made it through the BMT process and are here to tell the stories about it.  He'll be following my care now through the radiation process and follow up visits after that.   I'll have to go back to the BMT clinic for periodic bone marrow biopsies to make sure that my bone marrow is growing properly and staying healthy. 

I should be starting the radiation treatments in the next week or so.  I'll update on that, and anything else in between.  Cheers!

Off the leash!

So, who is the ugly bald dude?  Yup, its me!   Spike and I had a little adventure yesterday.  A good friend of ours, Scott runs a Photog studio, Scott Lowden Photography.  He invited Spike and I over for a few shots while he did some experiments with his new lighting rig.  Way beyond my pay grade, but pretty cool stuff. 

If you want to see more of this nastiness, go here.  Beware, it has been a little while since I have been able to hit the gym, so I'm a bit soft. 

Today is a great day.  I've "graduated" from clinic- hence "off the leash".   I was getting myself a little too excited, thinking a clinic discharge meant I would be allowed to get back to normal life and start doing everything that I want.  Not so fast my friend.  Along with my discharge papers came a long list of do's and don'ts.  Until 100 days, most of them are still don'ts.  There were some very strange ones, such as contact with Pigeons- NO.  I asked about that, and the doc said "you'd be surprised". 

So far over the last couple of weeks it has been very hard for me with UGA playing and me not being able to attend the games.  I've been giving my tickets to my brother, Greg.  Its killin me!  The beauty is all in the timing though.  According to the sheet of no-nos, 3 months after transplant I am allowed to go to spectator events.  Just so happens that the UGA/FL game in Jacksonville sits right at 90 days.  And who has tickets?  You guessed it.  Yeah! 

As with everything else on this journey, with every bit of victory, there is always another little hurdle put out in front of us.  While we won't know for a good 6 months that the transplant has completely put the disease into remission, the doctor wants to add one more step to my treatment to give me the best shot of not seeing Hodgkins again.   He reviewed my case with his buddies at the Mayo Cancer Clinic.  Apparently, for younger patients with relapsed Hodgkins, studies have shown that a directed, low dose radiation regimen gives the patient a significantly better chance of not seeing the disease again in the long term.    The reason they have waited 'til now is to allow my bone marrow to recover to a certain point before doing the procedure.    I've known this was a possibility all along, but the doctor wanted to do some research on it and speak with other experts on the matter.  I'll know much more in a week or so when I can meet with my oncologist next week.  My transplant doc says it is absolutely painless, and with the low doses I will be receiving, the side effects are minimal.  Some tiredness, possibly a sore throat and that is about it.  Said nausea is a very slight possibility.    The good news is that it will not affect my immune system and will not change my 100 day time table to freedom.   Everything remains on track.  I'm just going to pretend I'm going in for an x-ray a day for a few days.   I'll fill y'all in as soon as I get details. 

Lauren, you asked for it.

So, here is my gunshot wound from getting my line out.  What was supposed to be about a 3 minute process, turned into 20 mins of cutting, snipping and pulling.  I had apparently healed completely around the catheter, so it was basically surgically removed.   There is no real pain associated with it any more- its just a big hemotoma, about the size of an egg underneath the scab.  It is hard as a rock, but will eventually dissolve.  The dis-coloration- the yellow, purple, green is all just a big bruise where blood has drained out.   No biggie, it is just going to be ugly for a couple of months or so. 

Beyond that, life is good.  I'm feeling virtually normal, and they are starting to give me a little more freedom.  For instance, I can go to a friend's or family members house for a visit now as long as no one is sick or no small children.  I've also been cleared to drive short distances as well- nothing over an hour.   I drove home from clinic this AM.  It is the first time I have driven in probably 3 months.   I am still having to go in once a week for lab work until I get my discharge papers, which will happen on the 19th.   YAY!  Y'all take care, and take a second to remember our brothers, sisters and their families that were lost in the 9/11 blast today.   My wounds and issues pale in comparison. 

Friday, already?

It's Friday, and I'm hoping for as good a weekend as last.  Several things are already in place, including the UGA game coming on at 3:30.  I'm glad just to have something to look forward to and then to pass the time when it gets here.  Plans are to spark up the grill again for some new tastes and see what happens. 

Things are as well as they can be, and getting better.  One thing I didn't get into with my last update too much, I am still struggling a bit with.  Resulting from the central line getting pulled, I have a hematoma about the size of a golf ball where my body had healed around the line at the exit site.  I also have bruise like discoloration radiating from my collarbone all the way down to the bottom of my pec, in a big circular like shape.  Its ugly as hell.  And very sore.  I still can't get my right hand over my head yet- but it is getting better.  I had to go in to clinic today for labs, and they sent me upstairs to a surgeon/wound care guy as a precaution.  He took a look, poked at it a few times trying to get it ho bleed and then said it was fine- just a giant bruise that will take a little time to heal out.  I guess I've got nothing but time, so bring it on. 

On the energy front, all is great as well.  Many days, I am able to get by without a mid day nap.  Only problem with that is that it makes me really stir crazy.  I figure if I feel like being up, then I should be out, whether it be at work or just socially. 

My discharge date from the clinic is set for the 19th- which kind of irks me a bit.  It was originally supposed to be this week, but since my doc is out for 2 weeks, he is pushing the appointment back and not letting one of the other docs do it.  I think he feels bad for not being there for almost the whole time I was.  Right after I started, he took a month off to be with his wife, as she just had a kid.  Whatever, it doesn't really matter, as I'm stuck here anyway- discharged or not.   If you are going to the game in Athens this weekend, Go Dawgs!    If you swing the other way and are going to the game at Tech,  Go Dawgs!  (Yes, living in Atlanta I have several friends that went to Tech.  Can you believe it?)

Best weekend ever!

Why was this the best weekend ever?  Well, it started off on Friday when I got my cyborg plugs out.  I'm not counting the fact that what is normally a 3-5 minute procedure turned out to be a 10-15 minute procedure for me.  We'll just say I am a good healer, and my skin and tissue had grown quite fond of the line.  Lots of jerking and scissor snipping, and I'm all good.  Just very sore- that will pass.    Back to the weekend thing.  
Reason #2- College football season started, and since I'm on "house arrest" I was able to do some good time in front of the tube soaking it in.  Dish network screwed up the PPV of the UGA game I bought- but that is a whole other post.  I was able to get it on the radio though.  
Reason #3- Beer.  As my taste continues to come back, I am constantly introducing the tastes that I am fond of.  One of these is cold beer.  I decided to break the seal on Saturday and have one.  Verdict- it was goooood.  I still have a bit of trouble with the bitter vs tart thing, so the sweeter beer is what I think I like for now.  Hoegaarden is my friend.  So much so, I revisited with him on Sunday just to make sure I wasn't fooling myself.  Enjoyment confirmed. 
Reason #4- Food and friends-  On Sunday, a team of our friends stopped by to cook us up some food for Sunday and leftovers for the week.  Since the beer was so good, I decided why stop there?  I ate up some chips & salsa, guacamole, corn, Grilled flank steak, grilled chicken and some grilled veggies.  I still can't eat much for a portion, but I can certainly have small portions spaced over time.  Lets just say I went back to the trough a couple of times.  Its just remarkable how fast things are coming back now.  In the mornings, which is the best time of day for me, I feel almost normal.  
Reason #5- Coffee!!  As I sit to type this blog today, I am thoroughly enjoying my first cup of coffee since mid July.  I know its not the weekend anymore, but I'm gonna count it. 

Melissa and I are so thankful to have such great family and friends as our support network.  I just can't imagine having to go through this without everyone.  It is truly a blessing. 

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!