Feb 28th - Duke Finally Called...

Update:  Duke called yesterday as promised. After a long day of waiting, Dr. Henry Friedman called at 9:18 pm.  He is a fast talker and to the point.  Just like all the reviews stated.  GLAD we read those first.  He said the following, "This is Dr. Friedman from Duke.  We reviewed the MRI's and will not perform surgery.  My team will call you to set up a plan for you to come to Duke".  My only response and I wanted clarification was, "So you will not do surgery?".  He stated again, "No, even my top surgeon in the world will not perform surgery.  My team will get in touch with you to come to Duke". That was it.  So,  I assume they will call us for trials and radiation.

For some reason, I called Dr. Reddy (I woke him up - sorry) and told him what Duke said.  He confirmed they will not operate but encouraged us to still go to Duke for their program; whatever that will be.

Leigh-Ann sent me info on Barnes Jewish hospital.  www.barnesjewish.org.  I filled out their info for a call back also.  After all that last night - Phil and I sat in our new meditation room with the aroma pot, oils and listened to a CD.  Thank you Michelle Anderson - wow the oils are incredible!!

We will meet with Dr. Dunbar tomorrow at Piedmont for trials and then Dr. Simon for radiation consultation.

Phil and I really have no reaction towards this news.  We are OK with it.  We have heard the worse news already on February 7th.  He still has cancer. We love each other more every day. We are thankful for each and every single day.  Make it count!!   Phil always says, "none of us are getting out alive".  True.

In the meantime, we will continue this fight.  Phil read this wonderful book that Jennifer (pic below - she is in the middle and cured herself from Stage IV GBM) gave him called, Radical Remission.  A guy had the exact same thing Phil did and is cured.  It is all about self healing, diet and meditation. We got this!  He may go Vegan now because this guy did not eat any meat or dairy at all.  Beans, beans, beans.....ut oh!

Feb 24 - Duke Called - "God Shot" of the Day

Update: We saw Dr. Reddy today.  He will be our "chemo" doctor.  He is an avid runner and very impressed with Phil's history of marathons.  Especially his sub 3 at age 50 and Phils completion of 12 marathons in one year.   Dr. Reddy would like to run Boston but not sure if he can qualify with his slower time. Hate it for ya. Stick to fixing brain tumors doc! Great bedside manner, listened and gave us his cell number.  Love him!

Phil has "white coat" anxiety.  His BP was 153/88 and Pulse was 82. Weight at 194.8. Pulse is usually 50-53.  Plus he is almost 5'11".  Emory measured him twice at 5'9" the other day....LOL

Recommendations from Dr. Reddy:
1.  We need to get you into Duke University asap for trials.
2.  You need to see Dr. Dunbar at Piedmont for trails.
3.  You will see "radiation" guy, Dr. Simon next week.
4.  Temador (chemo pill) wil be mailed to your house but DO NOT take until further notice.
5.  No to surgery - he explained it is like weeds that will grow back because we can not get the root.

Within a few hours - he had all the appointments set for us except Duke. We should expect a call from them. Right.  So here is my "God Shot"  - (a term widely known in the AA and rehab world). I was originally going on Monday to pick up another CD of images for next weeks appointment. I decided to go this afternoon to get out for some fresh air. On the way, Duke University called and said to Fed Ex a CD to them for Monday morning delivery. Dr. Henry Friedman and Dr. Allan Friedman (no relation) will review his images and call us lunch time Monday for the next step. The lady said she does not want to give me false hope BUT the doctors are known for performing surgery on "inoperable" tumors. First time I heard the word hope from any professional.  I ran into the hospital, picked up the CD, and just made it to FedEX. Truly in the right place at the right time when that call came in. I call that a "God Shot".  Fingers crossed for Monday that they will take Phil on.

Below is a Youtube link for Dr. Friedman - I cried like a baby watching this with excitement!!  He is known world wide.  This guy will fix Phil!! - yippee!!  Even Phil showed excitment by calling his mates back home and said the Duke Boys are gonna take a crack at his head.  Dukes of Hazard was Phils favorite show growing up.
https://www.youtube.com/watch?v=n1Z8yMxSf5E&t=9s

My sister Patty (remember I have 6 sisters and 1 brother) from Florida made us custom face masks. She is adament that no one steps into this house while Phil is having radiation without a mask.  Even a thought of a cold - wear the mask!  Thank you Patty - we love them!!

Another great moment of the day is when Katie Mae and Johnnie stopped by.  You guys are great! We appreciate you both!  I worked with Katie Mae at my previous job for 5 years.  We call her "Half Pint".

Feb 23 - Decided on Northside Forsyth - not Emory

Update:  Northside Forsyth it is! Dr. Belknap, get ready for us.   Phil and I decided today this is where he is going to have his radiation. The treatment will be the same everywhere and they actually have a human that answered the phone in 3 rings.  Yes, the simple things I need right now.  Waiting 2 days for that promised phone call that never came and my numerous attempts with each time being on hold from 11-26 minutes and THEN finding out that Johns Creek Emory does not do radiation! "Sorry, we thought they did when you were here on Tuesday"  WTH?  It's OK,  We are moving on..... Emory is fab, just not for us.  There is a reason for everything.

We meet with Dr. Reddy tomorrow at 7:45 am to learn all about our new normal.

Phil feels and looks wonderful!  His spirits are up.  He continues to write every night.  His weight is stable at 193 lbs.  We have a full day tomorrow with an early appointment and visitors. Life is good!

Thank you David & Kathy Griffin

Coincidentally, we had a visitor today who we have not seen in 25 years.  Phil and I worked with Kathy Griffin at GEC when we were dating!  Phil works with her husband David at L-3.  She is a nurse that actually worked for Dr. Reddy for 10 years and was giving us the scoop on him and how great he is.  What are the chances of that? See.... IT'S ALL GOOD

Phil and I went to the gym this morning. We promised to get back into our routine.  I had him do my workout.  Rode the bike for 20 minutes, hung out, did a few lunges, hung out some more, saw sister Julie, chatted, saw Zach, chatted some more, walked around the parking lot and off we went. He thought I was kidding.  Nope, that is it big guy!  A little different from his usual workouts.  We don't sweat on mine.

Zack came by this morning (forgot his pic, sorry) and Rockin Rod, Marty and Steve stopped by during their lunch break which was super nice and much appreciated.

THANK YOU SISTER JULIE FOR DINNER TONIGHT - YOU ARE A LIFESAVER!!

Gut provided by Megan and Sister Julie - we call him "Thick Honey"

Feb 22nd - TEAM PHIL and Ketos

Update:  Phil has decided to cancel the appointment at MD Anderson next week.  He has many reasons and I respect and honor any decision he makes.  Bottom line, we need to start radiation immediately - clock is ticking - can't postpone radiation another week due to more consultations with more doctors at MD.  They have seen the pathology reports also, they are not going to tell us anything different.  I contacted a 3rd hospital to ask about the Gamma Knife - not gonna happen. Atleast, not yet.  I found a trial at Univ of Michigan for Stage IV GBM patients on the Keto diet.  I am waiting to hear back from them also.  The more we looked into the Optune - the more we are on the fence about it.  Again, it is completely up to Phil.

Plus, I am a firm believer that this Ketogenic diet will cure him.  Phil spoke to a local woman today that had the exact same tumor Phil has many years ago and is now tumor-free due to the diet, meditation, exercise and supplements.  She did this after her radiation and chemo.  We will meet with her very soon.  We love her already!  Thank you Doug Purdy (aka Doogie Style) for connecting us.  Hugs to you also!!  This is the first time since "the news" that Phil has felt empowered and more confident than ever.  He even went for a 2 mile walk and has been helping rearrange furniture today.

Phil and Doug Purdy (aka Doogie Style)

OK, I am not one to post pics of our food on FB. But, my god I take my hat off to all of you that cook daily.  I'm not complaining at all. If you know Phil, the man can eat. ALOT. Here is a typical breakfast, lunch and dinner for Phil. Steak, chicken or salmon.
Fat - protien - fat and more fat.

My sister Leigh-Ann and her son Harrison came over today with TEAM PHIL bracelets.  What a wonderful, heartwarming surprise.  We will be happy to mail you one.  Email your address to me or Leigh-Ann Stewart via FB.

Feb 21 - 2nd Opinion from Emory

Phil and Dr. Sengupta

Update: We had our Emory visit this morning with Dr. Sengupta. (Atlanta traffic stinks - 2 hour commute this morning)  She is from Phils neck of the woods in England.  She pretty much reiterated what Dr. Belknap mentioned yesterday.  There is no cure - you need to start radiation immediately.

Recommendation: After 6 weeks of radiation, Phil will have chemo for several weeks.  During that time, he will be fitted with Optune.  This is a portable, wearable device that sends low electric fields to help slow or stop the cancer cells from dividing and may cause some of them to die. This has been the best option we have found with clinical studies and FDA approved a few years ago.  

Surgery? No
Gamma Knife?  No
Return to exercise?  As much as he can tolerate.
Swimming?  Not recommended.
Cannobis Oil?  Why not.

Phil received the sweetest note from his beautiful niece, Sydney Aven from Dallas!  Thank you Syd!

Feb 20th - Pathology Results Are In

Update:  We went to see Dr.  Belknap today to review the official pathology reports.  It is confirmed that Philip has Stage IV Glioblastoma.  The biopsy results were done by Emory so we have confirmation from them also.   

Recommendations from Dr. Belknap:  Radiation 5x's per week and then oral chemo. Get as many opinions as possible if we want.  He will not and does NOT recommend surgery at all since it is a bleeder and would be very dangerous.  Clinical trials are recommended.

If it goes untreated, survival rate is 2 months.

If treated, survival rate is a year.  HOWEVER, Phil is so fit and young, he would be more than likely on the survival tail of this and longevity is longer.

I asked about continuing the Ketogenic Diet and can he start the Cannobis oil?  Doctor said it will not hurt.  Pretty much, why not - it can not get any worse.

Next Step:  Emory visit is at 9:00 tomorrow for more opinions.  MD Anderson is set for March 2nd.  But time is ticking and treatment needs to be started asap.

Good News of the Day:  The staples were removed.  Thankful we had a few weeks to process this devastating news, so we pretty much knew what we were going to hear today. I am THRILLED to have a year or more with Philip! Hey, it is better than telling us he has limited days or weeks.   In that time, treatments surely will improve, he is young and fit and will beat this little fucker "Napoleon" tumor! Life is good and we will cherish every single day we have together. He is able to travel.  Who knows, we may walk the ENTIRE Camino this year!
 

Dr. Thomas Belknap after reviewing results with Phil

Feb 19th - Thank You Message from Phil and the Tumor Name Winner is.....

Napoleona little fucker with over sized ambitions but eventually 

beat by a scrappy Brit - Jimmy Aven from Texas 

"BFT" from Mike Walker came in at a very close 2nd.

Thank you Kelly and Big John for grocery shopping for us. I will never leave Phil on his own since I read that seizures are very common with those that have brain tumors. I am glad I am aware of this as I have posted procedures around the house of what to do if Phil has one. Tomorrow is one of the first of many doctor visits.  We have many questions and high hopes that future treatments will fix Phil right up and he will be back on his motorbikes. 

Carla - Phil - Uncle Bill - Mom - Dad - Aunt Aida
Sister Kelly - Phil - Bill - Mom - Dad - Aida

Sharon and Phil

Mike "Half Breed" - Christian - Mike - Phil - Dan - Sarah - Jane

Dan and his dads 1973 BMW

Phil and Director of 2 Wheels, Paul

Phil and Christian

Gabe - Nolan - John

John - Mike

Leigh-Ann - Megan

Lovers Carla & Philip

Feb 18th - Saturday Purple Rain

Update:  We will give you a medical update on Monday after we see the doctor. This weekend we are celebrating friends, family and bikes.   I will not embarrass the person below and name him (clue: works at L3 and his nickname given by Phil is Ricky Bobby). Phil has a nickname for everyone.  A guy called today that we knew from 20 years ago and I had no clue who he was until he told me Phil named him Half Breed.  Ah ha, I knew it was then Mike. Thank you guys for visiting today!  Enjoy your pics below.
WE CELEBRATE YOU!  

You are a good sport Ricky Bobby

Phil finally got his Indian - thanks Randy!

Randy - Phil - Patty

Phil and John aka "Big John", "3", "Diddy"

We call him Bond - that is all you need to know about him

Vegan Keto Wild Caught Only Liz - Phil - Bond

Bond found the Dainese

Feb 17th - Yardwork and Ice Cream

February 17th

Happy Friday! 

Julie is the Morning Angel.   She better keep it up, she is spoiling us by coming over every morning to check on us, deliver fat bombs for Phil that she made the prior night and to make sure I am OK. One morning we walked downstairs and she is in our pantry at 7am disapproving of all the items that are not on the Ketogenic diet.  We love you Julie!

Update:  Emory Winship Cancer Center called this afternoon to see if we could come in earlier on Tuesday.  Our appointment now is at 9am instead of 3pm.  Of course I asked why.   They just wanted to change the time in case they call for lab work and for us to beat the traffic going home since we live in Cumming. Hmmmm....OK, I will take that answer. That was very considerate of them.

MD Anderson called while Mark Brown was visiting and set an appointment for March 2nd. Northside appointment is still set for Monday to have the staples removed and to review the pathology reports.  We have many options and Phil is also researching Duke doctors. He likes what he is seeing so far. I just told him to decide on who he feels most comfortable with.

Megan is the Ice Cream Angel.   In the glory days, Phil would eat a 1/2 gallon of Blue Bell ice cream most nights in one sitting.  Never gained a pound.  He worked it all off during the day with his running, swimming and biking.  That was his only vice - ice cream.  Megan made him homeade ice cream which is Keto approved of course.  Yes, it was gone in one sitting.

Phil enjoyed every second of the afternoon being outside and especially witnessing John cut the grass!!  As a child, John was "King of Breaks" - 5 minutes outside doing ANY yardwork and he would suddenly disappear.  Phil would find him sitting under a tree or inside on the couch watching TV taking a break. We laugh now about it.

I spent most of the day filling out paperwork.  A LOT of paperwork - disbability, insurance, getting items notorized, faxing, etc....Yes, the doctor offices requires everything to be FAXED.  Who faxes anymore?  We are wearing out the fax machine at Pak Mail.  Hey married folks, get your Power of Attorney, Health Care Directives and Living Wills all filled out. We did this years ago and never got it notorized.  So we had to start all over. This is just the short term disability paperwork below - ha.  I am NOT complaining at all....Life is good and I am thankful for every single moment.

Tomorrow we have a busy day with Big John, Kelly, Liz, Mark, Randi and Patty visiting - YEAH!

Feb 16th - Day Filled with Love

February 16th

Some days all you need is love and a hug!  Today is one of those days!  The visitors helped today.  Love all of you!!  Phil and I thank you.

Adult Coloring Book and Fat Bombs help alot!
Thank you LeighAnn, Mike and Mega

Thank you Steve, Andrew and Julie!

Phil - John - LeighAnn - Mike - Megan

Feb 15th - For the love of......two wheels

February 15th

We better talk bikes atleast once on this blog.  Thank you Tom Meyers from the  Ducati Forum for posting the pics.  Who would go to a Ducati meet with a KTM?  Phil would of course.  Just to wind people up - how I adore him!

Chris Taylor and Phil discussing.....bikes

Update:  Phil had a great day today. He had to sign a few forms and had trouble writing the date.  He knows the date in his mind, he just had to think about how to write the numbers down.  Other than that he was very productive. He has a rage for order - did I mention he is an Engineer?  He has organized every cabinet and closet in the house. Great therapy for him.  I am beginning to wonder if the doctors made a mistake,  I do not see anything wrong with him. Spirits are up and continues to make me smile every day.  Oh, how I love him!

Our son John and his beautiful girlfriend Megan - what would we do without them?

Tom Brown and Phil