The weekend is upon us!

Found this online and loved it. It seemed so appropriate for Brain Cancer Awareness month and for all of the love, support, and prayers that you have surrounded around my family.

Have a great weekend! Go California Chrome!

Blog 2.0 (3.0? 4.0?)

Greetings, friends! We're back and ready to be better than ever!

http://youtu.be/xZzEzDkeHzI

Quick update on Hill family happenings:

We sold our house in November and moved into our new home mid-March. We stole a page from the Lexington Polloms' play book and moved in with Todd's parents for the time in between. We are working on getting settled in and much to Will, Claire, and Charlie's dismay, we bought furniture.

http://vimeo.com/95290597

Also, our baby turned two. Eek!

In October, Todd started a new job at LG&E (also owns KU, for you Danvillians). He loves it, however should your power ever go out, please don't call him (ahem, Dad..) He is a project manager.  He does not shimmy up electrical poles.

Running update:

Claire and I have been doing a 4 mile run at the park behind our house most days.  She loves it because it always involves a trip to the playground or sprayground at the end.

Todd, the overachiever, ran the Derby mini in April and beat my personal best with a time of 2:08. Punk.

5/9/14 Update

Let's start with a health update. Not much has changed from the last post. I was supposed to start chemo this week but when I had blood drawn on Monday my platelets were at 78,000 and they need to be at least 100,000 before I can resume the chemo therapy. So we will try again next Monday. The 78,000 number in,and of itself, is not disconcerting. But they can't get too low(20,000 - 30,000).

Our weather has finally changed to spring here and it has been fabulous. Yesterday I attempted to play in a golf scramble to benefit the hospital foundation. The event and the weather were great, my golf game not so much. I got really tired and had to quit after 9 holes. My balance is still not great.  I am doing physical therapy twice a week and I need to be more vigilant with my homework. I ran 2 miles this morning and lost 3 more racquetball games this evening. I am getting a little more competitive and maybe by this time next week I will be able to report a win. For those of you who know me well please sit down for this next sentence. 

We planning to have most of the family come in next weekend  That should be a blast.
All in all it has been another good week. I do need to apologize to anyone who listened to me about the Derby. Actually Marti and I hit a lucky streak and walked away with$148. Again thank you so much for caring and hopefully not being too mad about my Derby "tip"

Happy Mother's Day

Derby Post

Once again the blog is back.  So what's up? On again off again?  Definitely on again. Two reasons:
1. In the last couple of weeks I have heard from one friend I was surprised even remembered me. We played little league baseball together. His dad coached our team. Larry Tagert, it was really good to hear from you again.
I also received a very poignant note from a good friend from high school who ran track with me and we played football together. He was a DB and I was a wide receiver wannabe. Suffice it to say he enjoyed practice a lot more than I did. Cliff Staton was a smallish type who would light you up in a minute. But he also learned to write somewhere along the way, as he sent me a note that made Marti and my daughter and at least one daughter -in law cry.  

Since we last visited, on this site a lot has happened. We are no longer in any clinical trial at Duke, so that monthly trip is no longer necessary.

The tumor, true to form, has made a recurrence. Just to make sure, Duke did a brain biopsy and it was positive. The plan now is back to chemo 5 days a month and I have had 5 cyber knife radiation treatments, which are absolutely painless but they wiped me out  and then I had a seizure. When you put the chemo with the cyber knife with the seizure and you end up with a lot of whining , like the last sentence. No more of that. We have also had some really GOOD news as well.  Our youngest son was married to a wonderful young lady on the first of March.

In addition I have a plan to get back to some sort of decent shape. I am attempting to run 2 miles a day, however I  am struggling right now. So if I put this in writing I expect you all to hold me to it. I want to run a 5k around Memorial Day and the Bluegrass 10k on the 4th of July in Lexington. Followed by a half marathon this fall.

More posts to come. Daughter Sarah and son Sam have indicated they will help this time. So please hold them accountable as well.

The second reason for the blog restart is daughter Sarah informed me last night that May is brain cancer awareness month. And I know you think I have the Kentucky Derby winner and you are right. The winner will be Intense Holiday.

 

As always thank you so much for caring enough to slog through this stuff.

The blog is back; again.

OK, I know it has been a while, so grab your favorite beverage and let's get started.

I completed the 1/2 marathon in November, but it wasn't pretty. Actually it was pretty awful. I walked through every water station. On the health front, I have started the vaccination regiment. Some of you may remember when we started this journey there was talk of me getting into a program that used my own white blood cells "amped up: to fight the cancer. We took a slight detour with another clinical trial. But when microscopic cancer cells were found during the second surgery, we are now back to clinical trial #1. The only problem is that it has been all cancer treatments all the time so far. A sampling below:

Three weekends in a row to Duke to start the vaccine program

Still getting an MRI every other month

Receiving an IV of Avastin every other week - No side effects to speak of, just time consuming. Thank God for insurance.

Since the 3 straight weekends to Duke were between Thanksgiving and Christmas, needless to say
the holidays this year were stressful.

I still feel really good and am still running. Very slowly and cautiously.

Enough whining and I haven't even mentioned how awful our weather has been this winter. Pitchers and catchers report in about a month. Hang on.

You better sit down for this...Our youngest son Sam is getting married to Sarah Davis. For those if you keeping track at home that will be one daughter in law named Sarabeth, one daughter named Sarah and a second daughter in law named Sarah. Oldest son John has just decided to call Sarah Davis Rebecca and our granddaughter cannot say Sarah, yet. The best she can do is Aunt Rah. I think that is where this will probably land. March first! Yikes!

No promises but I will try and do a better job of keeping this blog current.

As always thank you for caring and hanging in there with us.

Pre Race Update

I had Avastin treatment #2 Thursday. All went well. The latest schedule is MRI12/13, back to Duke for a doctor's appointment 12/16. New round of vaccines start first of the year. I am anxious to start the vaccinations again, but I am also glad to have the short break from the monthly trips to Raleigh.

Marti has also gotten a well deserved break. She returned from a week in Florida yesterday

I have decided, with some gentle encouragement from a couple of close friends, to participate in the half marathon Sunday. I say participate because I am afraid it would be a misnomer to say I am going to run.

I am also adhering to no shave November. I had a co-worker stop me earlier this week to ask me if I was tired. She later clarified that she realized I had not shaved and thought maybe I had overslept. Let me just add I have not shaved since Monday and today is Friday and I can count on one hand the number of people who have noticed.

As always thank you so much for caring. Your prayers and well wishes help more than you can possibly know.

This Stuff Only HappensTo Me

OK, so today was my first IV of Avastin.  So far I have tolerated it well (of course it has only been about 3 hours since I finished).  They did give me a  prescription for an anti-nausea medicine but so far I feel fine. 

This is where it gets interesting. 

For those of you who do not me well, however if you have been reading this blog for 2 years you actually know everything there is to know. At any rate I have a fairly weak stomach on a good day. I have been known to change a dirty diaper by positioning the child in front of me and a large fan behind me, so the odor would be blown away from me. So with that background I can tell you about my ride home from work tonight. 

I am sitting at a stoplight with a mini van in front of me and I notice the passenger side door open and an elderly lady (about Marti's age) got out and the sliding door was open and then I noticed someone had puked all over the street. 

Thanks again for caring and I promise the rest of these post will be readable at dinner time.

Sent from my iPad

My sister reminded me last night that I did not do a post for day 2 at Duke last week.  So here goes….

But first we have had a great weekend.  Sam was sworn as an attorney in Kentucky. And as part of the oath he had to swear he had never been part of a dual. John had to make the same promise when he was sworn in a few years ago.  I am glad they did not ask me because if you weren't dualing what were you two doing when you methodically tore up our furniture as you were growing up. I distinctly remember a time or two when "I am going to kill you" came just before " I am telling Mom".  Also we went to two weddings (I missed both ceremonies but made it to both receptions - It doesn’t get any better than that).

Now back to the matter at hand.  Yesterday I decided I am not going to be ready to run the half marathon in November, I am going to have to wait until March to run another one.  I am still doing some running; I got about 6 in yesterday, but not nearly enough to run 13 miles in 3 weeks.  The 2 month turnaround is just not enough time.  What an excuse.

This week I will start the Avastin IV on  Thursday which is a protein that should help in the fight against the cancer.  I don’t think there will be major side effects with this procedure. The first cycle will be 4 hours. 

I am still not sure when we return to Duke for the start of this vaccine cycle. 

I am sorry there is not much information in this post but again thanks for caring enough to check in, more information including Duke schedule, when we hear.        

FOLLOW UP TO MY POST A FEW MINUTES AGO

I went to the site I suggested you go to find out more about this study and there really is not much information about it, if you really want to know just let me know I have 13 pages of stuff, that really would only be pertinent if you are going through this, I really hope you NEVER need this information.

For those of you keeping score at home this was day 1 at Duke for post-surgery follow up and to try and get into a new trail (new for me) called RESTART.  It is specifically for recurrent tumors.   By the way the first trial I was in did EXACTLY what it was supposed to do, i.e. fight the protein that caused this SOB to begin with and the cells it did not kill, it changed their makeup, however still cancerous and nefarious.  So the new fight starts tomorrow.  Which means since the makeup of the cancerous cells have changed the original vaccine would no longer be effective.

If you are so inclined the pertinent information is at Duke Clinical Trials, search brain cancer and the study is Recurrent GBM Stem Cell Tumor Amplified RNA Immunotherapy Trial, or you can copy and paste this link in you browser.  And if you do this and actually read it, seriously consider getting a life.

If you do not read the stuff on the Duke site I will not be offended, the layman’s version is they are ampping up my white blood cells with a protein (Avastin) so my own immune system will be able to fight this disease.  

Tomorrow, or day 2 at Duke will consist of me going through a process called leukaphersis, or basically I am receiving a blood transfusion of my own blood. Huh?

Blood is drawn out of my left arm, much like when you give blood then run through a magic box, and the white blood cells are cultivated and the red blood cells returned to me in my right arm.  It is a 4 hour process.

For those of you that really want the details see the second paragraph of this epistle focusing primarily on the last sentence of that paragraph.

Why am I doing this blog entry and not either of the dynamic duo aka Sam/Sarah? Good question.

Their literary talents have clearly been exposed as wanting, not from a lack of trying at Danville High School or Hanover College but obviously something has dulled their senses. Sarah has an excuse now that she is THRITY, no such excuse for Samuel, although I suspect I know what is causing Sam to regress.

Again the treatments and message we are receiving here are very positive and everyone is very encouraging.

I have gained 2 pounds so it is time to kick the training into high gear.

As always thank you for taking the time and for caring enough to read this nonsense.

Gray day is back!

My cousin's wife, Shea, sent this fantastic picture of their three children. 

Let's be honest. You were tired of seeing people in all those brightly colored clothes.

In related news, my brother John has informed me that rumor has it that UK is wearing gray uniforms against Florida this week. The blog is getting some real influence.

Gray day at FNB to close us out!

Oh, what's that? You want MORE from Farmers Bank? Well, you're in luck!

The Stanford branch also looks good in gray.

In at the horn for Gray Day!

I am a big fan of my family.

My cousin Chris and her husband Bob.

My cousin Jennifer, her husband Ted, and their two cute pups.

And finally my cousin Gretchen's three boys Ben, Javy, and Alex.

Well done, everyone. Gray looks mighty good on you.

Thank you!

Thank you all so much for your pictures and continued support! We will never be able to thank you enough. It means the world to my Dad and entire family. Dad has the best doctors and nurses, an unwavering sense of determination, plus he is way too stubborn to be that sick, but I know for a fact that your love, supprt, and prayers have made a big impact on his road to recovery.

If you missed gray day, we'll forgive you. You are welcome to send pictures at anytime. As you've seen from some posts (cough, cough, Dad), we are always looking for fun pictures to incorporate. It doesn't just have to be of you rocking your gray. How about some training running pictures? We are still doing that, right?

Our final Gray Day submission comes from my cousin Larry with this comment of his: "Gray Day in Treasure Island, Florida." Sorry Larry, today the Bluegrass State had all the sunshine and happiness. (Too much, I know. I just couldn't help myself.)

Gray Day at FNB continues

The love from Farmers keeps coming!

Just in Danville? I don't think so. The Harrodsburg branch got in on the fun.

Gray Day! (I've lost count)

There is a Fifty Shades of Gray joke here somewhere. Thankfully, I am WAY too mature for that (and I just can't think of a good enough one)

So without further ado...

My Dad's sister, Roberta, her grandchildren (my cousin Kendrick's kids), and the cat. Sophia, the precious little girl, decided that they should make a poster, so they made it into an art lesson for the day!

My Dad's friend Cliff from high school, called this a "grayte" idea. (I'm a sucker for corny jokes.) Fun fact about Cliff, during the original 11/12 mini marathon, he ran every single step right by Dad's side.

Gray Day (Farmers Bank edition)

We should all be so lucky to have co-workers that are this amazing. Amy, who is sending me the pictures, called FNB a “Sea of Gray” today.

Gray Day! (Part two)

This is so much fun. We should all wear the same color more often.

Sporting my gray Farmers running shirt. Smiling and showing off her gray was only ok with Claire post-run at the playground.

Sam Lupfer, my Dad's childhood friend and idol from Kissimmee, FL.

My Dad's brother Bob and his wife Stephanie

Keep 'em coming!

Gray day! (Part one)

Welcome to Gray Day! I'm not sure why both of my brothers thought it was yesterday. As Sarabeth (John's wife) put it "Good thing reading for details isn't an important part of their jobs ...Oh wait." 

Let's get started!

Our fearless leader. Headed to work today!

John sent his outfit for the day, but forgot to include himself. Never fear. I'm here to help.

My Dad's good friends the Hagers

My cousin Chris' adorable girls. This picture came with the subject "early morning pic". I wish I looked this cute early in the morning.

Speaking of cute, here are my nephews going gray for Pops.

Stay tuned!

9.23.13 doctor's appointment

 Hello, we are back from my appointment with Dr. Baeker.  I got the sutures out and was released to drive and go back to work on Wednesday.

Tom said the neurological exam was "perfect". I believe we have decided on a new course of action. Duke has a relatively new study, called Re-start, for recurrent glios. You may or may not remember, when I first went down there they did a Leukapheresis cultivating my white blood cells only to be amped up with a protein called Avastin.

I will need to go to Duke 4 weeks in a row to get this started, however after that I believe it is back to once a month. The Avastin I can receive at Tom's office once every 2 weeks. It takes about an hour or less each treatment.  Sorry Sarah no pictures. 

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