March 6 - Radiation begins...

Update:  We saw Dr. Reddy today (chemo doctor) for check up and blood work. Radiation begins this Wednesday at 11:00 am.  We picked up the remainder of the meds today.  Phil has never taken meds except for the occassional Advil. I would have to crush those up for him. He has learned within the last few years to swallow pills, because starting this week he will have to take 5 pills per day. Those chemo pills are big.

BP:  139/82
Weight at 196.7

I asked the doctor for another MRI prior to radiation?  Uh, No.
I just want to see if the tumor has shrunk due to the oils, mediation and diet.  Phil looks amazing and stays as active as possible. Doctor said he was improving only due to the swelling that has gone down since the biopsy.  Whatever.  I still think it is the oils and diet.  I am sharing some of the texts between me and my sisters Julie and Laura.  We do get wound up a bit. These are the more tame texts - ha!  Love my family!  Phil is so amazing and incredible during this journey.  This is our new normal and we accept it. He is such an inspiration. He has yet to get angry or mad and would never ever complain. He is so thankful for every single day and makes the most of it.  He is my hero!

A few blasts from the past visted Phil over the weekend.  Leo and Tom.  Phil knew Tom Wages from SportsLife in Gwinnett about 25 years ago.  This young lad now has his own clothing line and store in downtown Atlanta named Tweeds.

Phil is enjoying all the new recipes.  It is a challenge to cook meals with no carbs, no sugar, no fruit, no meat, certain types of veggies, alkaline water with hp9+ and only items from the Alkaline column, no Acid.  Thank god for the Fat Bombs Julie makes Phil every day and the Curry from Megan. Here is Julie at 7am this morning with her delivery.

Check out my Cauliflower Hashbrown Egg Filled Cups.  Everything now must have Curry, Oregano,Turmeric and Cayenne. Those spices prevent and kill cancer cells.

Here we are meditating.  OK, I know, I know......NO selfies during meditation. I know!
Phil was out - he had no clue.

Patty sent me a great bracelet today - thank you!

Here is Leo - he does exist!!  Great seeing you Leo!

March 1 - New Quarterback and Q&A

Update:  Today started early at Piedmont Hospital with Dr. Dunbar.  She is our new and only Quarterback. She has a wonderful team and access to the entire league. She explained everything with diagrams and pictures.  She works with MD Anderson and Northside Forsyth.  She is the only one that truly explained how trials work.

We then headed to see Dr. Simon in Forsyth for Phil to have his face mask custom fitted for radiation. His dad was an Engineer for GE for 30 years. F-35 was a topic the first ten minutes.

BP:  125/82    

Thank you Swim Atlanta Masters Team - you guys are amazing!!  We love the caps and all of you. See you in the pool this Friday!

Q&A

1.  Why wont anyone operate?

See the diagram.  #1 and #2 is where the tumor is located. They are attached, it is one large mass which is 2" below the scalp measuring 5cm.    #1 is the center of the brain and connects the left and right side together.  Think of wiring.  If it is cut or breaks.....this is why no surgeon will touch it.  Too risky.  #2 is where the tumor is also.  The only reason they would operate on this section is to "debulk" it only or to get extra tissue for future trials or treatments.

2.  What about trials?

Phil is not eligible for any trials at this moment.  There are currently 4 trials for newly diagnosed GBM patients. Two of the four are currently on hold.  The other two are closed. Dr. Dunbar has the Master List of Open trials throughout the country.  Due to the tumor that is in the center, this automatically will eliminate Phil from majority of trials.  However, after radiation there may be a trial just suited for him.  We will be informed by Dr. Dunbar only.

3.  When does radiation start and what is the process?

Phil had his fitting today at Northside Forsyth.  They placed a wet mesh over his face and let it dry for 10 minutes. They now have a mold of his head.  Dr. Simon will now plan out a radiation map of exactly where they will target the radiation.  This takes about 5 days. Radiation should start next week. Radiation is 15 minutes, 5 days per week for 6 weeks. Phil will receive the maximum amount of radiation. I asked if I could sit with him during radition. Yes, I did.  Answer was absolutely not, he will be in a vault by himself.  They will have video on him and I requested soothing music for him. She is glad I mentioned that because the young techs put on rap and current "music".  I just want him to be comfortable as possible.  He lays down with the mask on and they screw the mask into the table so he will not move.  He did a dry run today and he said it was quite uneventful.

Marla and Kia adore Phil!

4. Will he lose his hair?

He will probably lose his hair only where the radiation will take place.  Phil said it was about time anyway according to his less hirsute peers.  He wants a cowboy hat.

5. Why don't you go to MD Anderson, Duke, or Dana Farber, etc.. for treatment or trials? 

We have investigated and sent images and scans to all of these locations plus a few more.  We received a call from all of them that no one will operate but come visit anyway for a 3-day consultation. Dr. Dunbar has direct access to all of these locations for any clinical trials and it would be a waste of time to spend 3 more days for more consultations and missing out on much needed radiation.  We will get the same treatment of radiation here.

6.  When does chemo start?

Chemo is in the form of a pill.  FedEx will deliver the 30 day supply of pills tomorrow.  He will take 2 pills - one at 140 mg and the other at 40 mg. Phil will start the chemo pills the same day he starts radiation.  Thank goodness for insurance.  The pills are 5k per month and we only pay $430. Apparently 5k is not bad according to what other cancer patients pay.  Ridiculous!!

7.  What can we do for you?
Well, Dr. Dunbar looked right at me and said to get some rest.  Phil also needs to rest and alot of TLC.  No problem there!  Continue meditation, good nutrition and positive attitude.  She also was adament that I stop researching and listening to everyone else. Stop filling paperwork out for every single hospital in the country.  Even though we are appreciative and love the advice, it is overwelming.  She is our only quarterback from here on out. She gave me a great example.  Take 4 identical Phils with exact same diagnosis and treatment.  Every single Phil will react differently to the treatment and have a different outcome.  Do not look at statistics.  You are unique.  Phil will write his own story and we are only in Chapter 1.

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!