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

Charity

I have always given.  From donating blood to artwork or handing a few dollars to a homeless person, I always try to help. I never really put thought into why I do these things; they just always seem like the right things to do.  Now for the first time in my life I am at a point where I need help.  The wonderful part is, I have been receiving it without having to ask for it.

Since the day I went to the hospital, friends and family have been showing up with food, gift cards, books, an iPod docking station, cash and an endless supply of positive support.

Card that my good friends at AFM put together
for their Wonderfest fundraiser. 

Every May for the past 15 years I have traveled to Wonderfest, a figure modeling convention.  In that time I have made some great friends, customers and colleagues.  Due to my current health issue I was not able to attend this year.  Much to my surprise some amazing friends put their resources together and raised cash donations for us.

This experience has been humbling; leaving me amazed at all the kindness.  Next time I give, I will have a better understanding of what a big difference a little generosity can make.
 
Thank you.
 
Dan

Cancer Treatments

My least favorite part of my daily cocktail

    When I was first diagnosed with cancer, I think I was more afraid of the treatments than the actual disease.  Surgery was no picnic, but turned out to be easier than I expected.  Now I am at the end of my first two weeks of chemotherapy and radiation treatments.  So far things have gone well enough.   I don’t ever feel great, but I also have not gotten sick puked, although Wednesday had me closer than I have been in a long time.  The doctors warned me that the worst side effect would be fatigue.  They were not lying. I have never felt so run down in my life.  I get the weekends off from radiation, which is great, but I am still pretty fatigued throughout the day, just not as much as during the week.

     As mentioned, I am also battling this with the ketogenic diet.  So far this has been going well, and tomorrow we are meeting with Miriam Kalamian, a nutrition specialist who focuses on this type of diet, specifically for cancer and other metabolic diseases.  With Miriam’s help I am confident the remaining pieces of info will be in hand to see this diet through.  By the way, I started my morning with a Canadian bacon, onion, spinach and cheese frittata.  That is my kind of diet breakfast!