Chemo Holiday

Me, my Dad and two brothers. Nice to all be together.

Chemo-holiday is what the medical professionals refer to the breaks a cancer patient receives between rounds of treatments.  The month of July has been my chemo-holiday. 

I had grand visions of feeling completely normal, back to my original self during this break.  However, the physical damage caused from the radiation, chemo and surgery has left me feeling a bit worse than I care to admit. I guess I am human after all. I do actually feel much better than I did last month, I just don't have all of my energy back yet.

I did have a great time during my chemo holiday.  The month started with my brother flying down for a few days.  We had a great visit with him and other family members. Thanks to my other brother and a friend of his I got to spend a day on the ocean fishing for cobia. I also had a couple of friends come in from out of town.  The three of us plus a local mutual friend had a great weekend, with the highlight being a day at the Salvador Dali museum.

Hanging with Christian, Dave and Jason at the Dali museum.

Next we visited Rhonda's family for a couple of days before heading to North Georgia to stay at the Second Wind Cancer Retreat.

The beautiful Second Wind Retreat cabin

Second Wind was the perfect closing to my "holiday". Earlier this summer when I received the news that I had cancer, we were forced to cancel our summer vacation plans.  Eventually Rhonda found the website for Second Wind. What a blessing!  This place is absolutely amazing.  Peacefully situated in the mountains of North Georgia. Located far enough away from everything to be completely still, quiet and beautiful, but close enough to several great little mountain towns if you need to see civilization.

Chilling on the front porch at Second Wind

We did some nice hikes where I pushed my body harder than I have since my surgery.  I was able to handle things pretty well, but definitely felt the fatigue.  Quite the humbling experience it was to have to struggle through a hike that I used to be able to do without breaking a sweat.  Unfortunately my son was unable to join us otherwise, the trip was perfect.

With the month coming to an end, I return back to my new "normal". Monday starts the first of three consecutive days of doctors’ appointments.  By the end of the week I will most likely be back on chemotherapy, but since I have learned to take things day by day, that is a story for another time.

Rhonda and Illiana on the bank of the Toccoa River

Diver Dan at Central Florida Hyperbaric

 

Brain cancer cells are nasty little beasts.  They drag themselves through the brain, like “Thing” from the Addams Family, looking for a nice oxygenated spot to hunker down and start growing a big fat tumor.  Unfortunately, as they slink around they create a web of cancer cells that wrap around the areas of the brain that you might find pertinent, like the ability to ask for a cold Guinness or recognize your kids when they bring you one.  The goal is to stop the little monsters from running crazy through your brain, because once they do, it is very hard to control them.  Want to throw some Temodar (chemo) at them? Go ahead!  They just smile and mutate!  How ‘bout some Avastin (another chemo)?  They just creep gleefully deeper into the brain! 

Dan in hyperbaric chamber

HOWEVER, there is one option that seems to help stop them...OXYGEN…LOTS AND LOTS OF RICH PURE OXYGEN!  Now you’re probably thinking, “Isn’t that exactly what the little grim reapers want?”  Why, yes it is…but the greedy oxygen addicts aren’t expecting the overdose that hyperbaric oxygen therapy (HBOT) can cause.

 Inside a hyperbaric chamber, the body is exposed to air pressure up to three times higher than normal which means your lungs can gather up three times more pure oxygen than when you breath at normal air pressure.  All of this scurries through the brain giving the cancer cells massive amounts of oxygen which stops them from plundering through your grey matter looking for more.  Since the oxygen addicts are satisfied, they sit bloated and happy in one spot making it easier for the radiation and chemo to annihilate them.  

Super oxygen saturation also kills cancer cells in a second manner.  As stated above, they are addicted to oxygen BUT they are totally adapted to thriving in low oxygen environments.  When a brain cancer cell gets too much pure oxygen, because of its damaged mitochondria and adaptations to low oxygen, it basically has an oxygen overdose and dies.

Central Florida Hyperbaric

Interesting Hyperbaric Oxygen Therapy facts:

1.     Hyperbaric Oxygen Therapy (HBOT) is FDA approved for treating 14 conditions in the U.S.  Insurance will only cover the cost of HBOT for these 14 conditions.

2.     A single one-hour treatment at Central Florida Hyperbaric is $135.  The exact same treatment in a hospital would be between $1000-$2500 in the U.S.

3.     HBOT is approved for treating over 80 illnesses in numerous other countries.

4.     Pharmaceutical companies in the U.S. actively lobby against HBOT.

5.     Pharmaceutical companies in the U.S. are successful when they lobby against HBOT.

6.     See number one.

Considering the Big Picture, I’m Pretty Lucky!

Some days I still feel the shock of “I have brain cancer”.  However, when I look around me and see what many others are going through, I count my endless blessings. 

This is the start of my sixth week of radiation treatments, which puts me at the Florida Hospital Cancer Center at least 5 times a week.  Each time I am there I realize how fortunate I am to be able to walk in under my own power.  As any parent does, I worry about my kids every day, especially with this going on, but at least they are old enough to not need constant attention.

Waiting room full of friends and family while I was in surgery.

My bout with cancer has brought my family closer together, which is not always the case.  I am continuously amazed at the support that I receive from my wonderful friends and family (plus the extended network of their friends and family).

I honestly don’t believe in luck, so rather than doubling down, I simply give thanks that my situation is what it is and not worse

Thank you!

The Etymology of Love

“Love, love is a verb.  Love is a doing word.”   Teardrop by Massive Attack

Danalisa at the Museo di Leonardo

Since Dan was diagnosed with brain cancer, we have been forced to look at life differently.  And though we all would have preferred to never learn these “truths” in this way, we cannot deny them.  To me the most profound lesson revolves around the word “love”.

It is easy to say you “love” someone or something.  For instance I love chocolate cake.   I adore it so much, that in our home it is often used as a measure for the amount of love I feel.  My daughter has been hearing, since her forced entrance into this world, that I love her “more than chocolate cake.” My already unnatural love of cacao has been intensified due to this crazy diet that deprives me of my pastry passion.  But using the word “love” for cake, shoes, movies and band members (lots of teens in our house) has weakened the true meaning.  The actions of those around us have been a reminder of what the word “love” means. And yes, Massive Attack was right, the word “love” is a verb.  It is something you do. 

Awesome Mahl stick built by my brother

When you truly love, it is not easy.  It is a sacrifice: Of time. Of money. Of dreams. Of assumptions.  This sacrifice is made with a smile and a sense of being made whole instead of feeling as if you have left something behind.  There is no loss in the act of true love but we do not KNOW this until we experience it and stepping out to experience it takes great bravery. 

                                        Thank you for your bravery.

Friends and family, with no extra money, have given us money. My brother spent many hours late into the evening making an art tool (mahl stick) for Dan that is worthy of the Museo di Leonardo da Vinci in Florence. He has a full time job and two small children.  His wife, in turn, loved him and us by picking up the slack in their home to allow him time to build.  Many of Dan’s friends have demanding jobs that already require more time in the day than they can physically give.  They still showed up at the hospital and our home to spend time just talking, knowing the work would be double when they returned.  Family members dropped everything immediately while Dan was still in the emergency room and drove for over six hours just to be with us.  My sister got a cryptic call that said, “Dan is in the emergency room.  Please get Illiana (our daughter) and take care of her” Done.  No questions asked.  These are just a few examples of the “love” we experience every day.

 

The School of Cancer sucks.  The administration is unfair.  The bathrooms have no toilet paper and the lunches taste like crap.  At least we have good teachers…no we have GREAT teachers!  Thank you for teaching us the true definition of LOVE.  I would have preferred to learn this lesson in a little easier way but isn’t that how all students feel?

Rhonda

Crazy Hair Styles

Sorry, the scar is very fresh.
I hope this isn't to gross

Before my surgery, the doctors told me that they were only going to cut my hair that was in their way.  Needless to say, I woke up to find a ridiculous looking bald patch on the right side of my head. Two weeks later I had my head buzzed to a uniform length.

Next, I was warned that radiation and chemo would cause hair loss. Chemo will most likely affect all my hair.  However, the radiation will only work on the area being treated.  Unfortunately, the radiation works quicker, so I am once again blessed with a hairdo that looks like I use a blind Friar for a barber. 

Radiation's attack on my hair follicles.

With the right side of my head almost completely bald, I decided it was time to bring back the Mohawk.  That plan changed the day I was going to the barber.  I woke up with a new bald patch that ran across the back of my head.

Left with only one choice, I have now joined all too many of my friends and family with the smooth bald look.  At least mine will most likely grow back again!

Ketogenics...Putting the "Die" in Diet

"My taste buds have packed up and moved out." Dan Colonna

                                                                          

My little keto kitchen

    I thought we were doing a ketogenic diet.  I thought it was a pain in the @$$. It turns out that we were simply playing, merely toying with this beast of gastronomical torture.  At the encouragement of a PhD doing research on this diet in South Florida, we finally gave in and hooked up with (pre 2005 definition) Miriam Kalamian, a nutritionist that specializes in the keto diet for cancer patients.  As it turns out, in order for this diet to work its magic, not only do you limit carbs and sugars, but also the calories.  Dan is allowed 1730 calories and 10-12 grams of carbs per day.  Average Americans inhale at least 200 grams per day.  Dan also must consume 23 grams of protein and 45 grams of fat per meal. Each meal or snack that we make must be treated like a complicated science experiment  (or meth lab) minus the potential for explosions.  Every element, from butter to bib lettuce must be measured to the exact gram.  Luckily, Miriam and her husband created a keto calculator for us.  They programmed the exact ratios of Dan’s diet and we just plug in the foods.  The calculator tells us how much to add of each item.  Believe it or not, trying to eat 45 grams of fat at each meal is lard, I mean hard.  We never thought we’d get sick of butter, olive oil, avacados and macadamia nuts, but….

Dan painting en plein air

    Now that we have a handle on this diet, and Dan is in ketosis, it’s on to researching hyperbaric chambers and DCA…..after I fix Dan another tasty slab of avocado between two slices of butter…

Rhonda