March 26th - Is this what you call FATIGUE?

Update:  Phil has completed 13 of his 30 radiation treatments.  Dr. Simon is impressed with his current physical activity and the regimen of oils, food and medication intake which Phil has down to the exact minute. I was proud to show him our chart which Phil initials after everything he takes. This doctor gets it. He is a weightlifter and told Phil to do what works for HIM. This is his journey. BP was 129/77 (best one yet) and his weight is 194. Fatigue has not set in yet however, a clump of his hair came out today.  He has a ton - so that is OK.  His right side mobility is pretty much cured, feels more alert and focused and his wit will never falter.  He jokes with the nurses and even gives them his wrong birth date to see if they are on their game. His standard answer to all the staff that asks him how he is doing is, "pretty shitty, how about you?". Everyone cracks up - yes, he says this EVERY single day to them at radiation.  Love it!  Side note:  I want to give everyone cannabis oil in the waiting room - make it legal!!

Entertainment:  Running is entertainment for Phil.  This is his mental therapy.  He ran 3 days this week with each run consisting of 4 miles. He said he was lolly gagging at running 8 1/2 minute miles.

Running was not enough stimulation this week, so he took the CBR out with Randy Bossi to the mountains on Friday. This is spiritual to Phil and always has been.  He loves the solitude, peace, twisty roads and nature. No doctors, no meds, no chemo, no radiation, no oils.....just alone in his thoughts. Why not?

Phil can not be exposed to the sun at all while taking chemo pills.  So, he bought this hat. Enough said.  His next guided trail tour starts in 10 minutes.....:) It is adorable.  However, he fit right in wearing it to Dixie Speedway for the bike races on Saturday night.  He is pictured here with 3 Mikes, Paul, John Michael and Matthew.  First night out in a long time!

Now on to food. Yes, this is one meal for one person.  Raw veggies, tuna and a ton of turmeric and other spices.  Through out the day, Phil will snack on about 10 fat bombs, 5 tablespoons of coconut oil and the Budwig mixture which is cottage cheese, flax oil and flax seed.  It looks like oatmeal, taste like #$^@.  

Andrew Gardner is here sporting his Team Phil band at the Cheltenham Festival in the UK. Phil and Andrew have been buddies since they were 5 years old.  Go Andrew! Hope you won some money.

And who can top cousins Patty and Bill sporting a Team Phil Mickey hat from Disney Land. Thank you for the support! Go Phil.  He is a huge inspiration and will beat Napoleon, the little f#$%$ that was beat by a scrappy Brit. 

March 19th - Huge improvement so Phil wrote the blog this week!

Update:  We saw Dr. Simon (we LOVE him) on Friday.  Weight is at 194 and BP is 135/80.

Phils cognition has improved so much that he wrote the blog this week. 

This week ushered in the first full week of chemo and radiation.  The chemo treatment is administred in pill form. This includes two rather large capsules which given my poor pill swallowing technique has mercifully proven to be fairly easy to choke down.  The timing of the pill consumption on radiation days is closely defined by the protocol of one hour prior to radiation, while the allowable food consumption window relative to pill intake which is two-three hours before and one hour after must be adhered to. Consequently even with a 1:00 pm daily radiation schedule, the majority of the morning becomes an exercise in clock watching, which is naturally accentuated for a rabid by-the book rule follower such as myself. The treatment itself has so far been uneventful, which has been somewhat of a relief. However, some of the effects are typically cumulative, so it is probably a little early to declare victory at a quarter of the way through.

Doctor wise, I had my regular Friday visit with Dr. Simon.  We spend most of the time discussing things other than my treatment.  I mentioned that a certain percentage of my right side motor skills seemed to have improved along with my handwriting and cognitive abilities.  He seemed happy that this was the case and put it down to a combination of treatment and my own attempts at rehabiliting those areas.  However, I think Carla and I both detected a mild sense of surprise when I told him I have not experienced any side effects so far.  Hopefully, the fairly strict Ketogenic diet that I am adhering to is having a beneficial effect.  At a bare minimum, I would hope that my current combination of diet, light exercise, meditation, incredible support from family and friends, prayer and adequate rest would provide a better than average chance of minimizing any issues.

Apart from the realities of the treatment schedule, it was a busy week with visitors.  Carla's brother Jimmy and his wife Stacy arrived, having driven all the way from Dallas, Texas with their adorable children Jackson and Sydney.  We spent an enjoyable few days with them even celebrating Syd's 13th birthday with a cook out at Tim and Leigh-Ann's.  Jimmy and Mike were nice enough to drag me out on a regular walking schedule which culminated in a couple of successful assaults on Sawtooth Mountain.  The day they headed back to Texas, Lee and Kelley arrived from Colorado.  This couple is Megans stepmom and dad.  (Megan is our sons GF).  Intending to relocate from Denver and stay with us until settled, John and Megan arrived in Atlanta the same day I was initially diagnosed.  Their cross country exodus was unexpectedly influenced by being thrown into this mess.  The both of them have been invaluable in dealing with the practicaltities of coming to grips with my 'new normal'.   As a thank you, Carla arranged to have Lee and Kelley fly in for a surprise visit.

On St. Patricks Day, everyone except me went to Avalon to enjoy the festivities. Later that evening, I rode with Big John and met up with everyone at Firebirds for a wonderful dinner.  This is the restaurant that Megan works at.

My spirits are up and there is a positive vibe in the Breakwell household.  Hopefully next week will prove to be as enjoyable as this one has been.

Carla and I want to give a special shout out to Jennifer Valiquett for the prayer blanket that was hand made from her church.  Jennifer is a co-worker and holding down the fort at Village Park until Carla returns to work. She is incredible!  Our neighbor Sue Jones is aware of the amount of visitors recently and graciously made an excellent dinner tonight for everyone!  This gave Carla a deserved break from cooking.  Thank you Sue!  It has been so heartwarming to see so many people sporting the Team Phil bracelets from California, Minnesota, Florida, England, and so many other places!  Thank you!!

March 10th - A Week of Ups and....

Update:  Phil started chemo and radiation this week.  He feels good and continues to have an enormous appetite.  We enjoy our walks and daily trips to the store for fresh produce and/or medications. Oh, plus our daily radiation trips at 1:00.  Radiation treatment is literally only 10 minutes. It takes us longer to find a parking space. Weight was 190 and BP was 135/82.

So here are the daily medications plus we have snake oils we have added in with the mix. Reading all the side effects from the meds, chemo and radiation can make your head spin. Cancer sure is a profitable business!  Don't even get me started on that.

I had to go in to make sure they were doing it right - ha

Superman after first treatment

Here is Julie checking Phils glucose one evening and making sure he is in ketosis. Which he is - yeah!  I panicked after comparing his blood results and noticed his glucose spiked 10 points in two weeks.  

Our Director of 2 Wheels, Paul Gibson has been busy this week.  I think he sold 4 or 5 bikes. I had to put my foot down on selling the Harley and the 900 for personal and sentimental reasons. Yes, I cried when the KTM left. I sent the new owner a note asking him to have great adventures and make everlasting memories on his new bike like Phil did. No tears were shed over the Ducati leaving!  However, Phil assured me that he has his eye on a new Harley for our future trips.  Plus who needs a dozen bikes, right?  This is part of our attempt at downsizing.  Ugh!

Passionate KTM lover Roger drove down from New York to pick up his new bike

John got a new job with State Farm this week. He is so excited. We are proud of him. Marmaduke is showing his support with his bedazzled Team Phil bracelet.

A childhood friend of mine from Florida had his Sunday School class sign a card for Phil.  I have not seen Tom in over 15 years.  Thank you Tom Bennett!!  We are so humbled by the daily messages from people praying for Phil and thinking of us.  It is unreal and we are more than thankful!

This card today helped after a NON-compassionate nurse returned my call after 1 simple question I had. She then accused me of harming Phil because he was not eating sugar or carbs; only fish and vegetables and saturated fats.  She stated that sugar and nutrition have nothing to do with cancer or his recovery.  Nor did the oils or anything holistic. Regardless, have some compassion, you are working with cancer patients and their families. Gets better, the doctor looked at me this week and said that I was grasping for everything and anything.  What? Who wouldn't? Unreal. I am happy for the meditation tapes - which I will go listen to one now. Phil asked me to let it go. I will. We are strong!! Phil is amazing beyond words.

Really, at the end of the day - this is what matters and makes me smile.  Another great adventure we had last summer walking the El Camino!

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.