From Where I Sit

Today it's all about ME.  The results from Greece were only slightly encouraging.  I did indeed kill some cancer but not enough so, alas, the second dose is encouraged. I consulted with my bomb of a doctor, Dr. Bomalaski with some questions regarding fluid build up and slight groin pain.  It was a good meeting confirming that YES you still have cancer and at some point we will need to discuss palitive care.  What? Hospise?  Poor Greg's mind went directly to my death bed.  Hold on brothers and sisters I'm not done yet.  Palitive care simply means when I need pain medication it's available.  Trust me I don't need any pain meds. The Moffit Cancer Center appointment didn't go so well either.  Seems that Dana Farber did not send the notes from my meeting nor did they send the results of the tumor gene test that would qualify me for their T-Cell therapy.  My local doctors office didn't include my scans in their package so not much was acc...

CURIOUS BARACUDA I ain't scared This big boy decided to come up from the deep blue to swim right along side me.  I think he wanted me to take his photo!  He charged me twice but I wasn't scared.  He was just a bit curious.  It might have been that shinny necklace that was dangling from my neck engraved with "Greg loves you".  Whatever, he was just a bit curious and kept his distance as we both swam along the reef. Island session part 8   (I'm not able to make it click on.  You will have to copy and paste it yourself if you want to watch.  Otherwise take my word for it!)   https://www.youtube.com/watch?v=5AbbxhsVjOM&sns=fb When we left Florida at the end of September to avoid the hurricane maddness and to forget about Cancer for a whle, I set a windsurfing goal for myself.  Take 2:02 minutes of your time to see my goal accomplished.  I have been working on this crazy trick called a push ...

Here we go This is the forecast model for September 10....HERE WE GO.  This just may raise my stress level this week but not much because it's already high.  Not really but it has been an eventful few weeks. Plan B was to have the IST (Immune Support Therapy) infused Aug 24.  That got delayed due to an International mail issue.  I got the call the morning before my sister and I were to leave.  Here we don't go.  Big apple cart upset!  I became insecure about counting on the next week but went forward with reservations for just myself.  Oops!  Not a good decision according to my sister.  However, I felt confident that I did not need company this time.  Everything could again go wrong.  I needed to take charge and do this with only myself to worry about.  I also had to remind everyone that this is my treatment and I need to do it the way I feel most comfortable.   The week waiting was excruciating.  I...

Windsurfing has afforded me many things in my life and I'm forever grateful.  It never ceases to amaze me how things happen.  How things come and go and what goes around comes around.  It is through Windsurfing that I am able to put plans A B & C together hoping to eradicate my cancer.  Plan A was traditional medicine which failed to adequately control my tumors after 5 rounds.  Plan A had nothing to do with Winsdurfing and only kept me from doing it.  I had to do something different. Glad I have a plan B.  Plan B is something called IST (Immune Support Therapy) sometimes referred to as DCT (Dendritic Cell Therapy).  It uses my own good cells to kill the bad cancer cells.  Not covered by Insurance nor FDA approved.  Plan B is active and August 24th is my D-day for my IST infusion.  I feel good about this plan.                               ...

This is what happens when you spend too much time in the house.  The shelf of On Edge coins above has made our recovery hours interesting almost daily.  The wind or a shirt sleeve will make them flat and we are challenged to upright them again and again On their Edge.  Greg is recovering from his knee replacement and me from my 5th cycle of chemo.   Greg is doing awesome and everyday remarks that he can not believe that he has a new knee.  A new walk and a new life to look forward to.  He's being a bit impatient wanting to do everything right now this minute but at the same time he is being cautious as the incision is still pretty nasty looking. Thus, the "after" picture will have to wait until some of the swelling goes away and it looks pretty.  He is at his physical therapy hour now driving and walking up and down the stairs all on his own.  Pretty amazing really. I'm On the Edge of doing something different.  My last chemo...

No chemo today.  I have not had an infusion since June 10.  I should be feeling better by this time but that's not the case.  The June 10th infusion is still taking its time working through my system blowing holes in my hands and feet.  Even today I have a new one.  So the decision was made to lay off and try something different.  I'm happy with that. These blisters came unexpected just days before Greg had his knee surgery.  Great timing.  We had some help from our care giver friend and all went well and is well now.  Greg is up and at 'em but not ready for that "after" photo just yet.  These things take time. This Independence Day we had a family reunion also not great timing but it could not have been more perfect.  We enjoyed the weather, the food and the fun but we especially enjoyed each other.  It was wonderful having my brother with his children and grandchildren, my sister and her children and grandchildre...

Flowing water over my blistered feet feels really good.  My hands are raw, like I've been sailing non stop, after a very long time off.  I called my doctors office to report my malady.  "Oh, the Doxel will do that".  Yep! It did.  I am so grateful to be where I can let the Ocean soothe my ails. The Ocean has healing powers both physically, and mentally.  At least it does for me. It's been tough between now and my last report, because I lost an even tougher cancer sister this past week.  She ran more marathons than me, and faster than me.  Her never give up attitude has me humbled. Her last words before she left us were: "George,!  I gotta get up." I gotta get up.  I'm down, and I gotta get up........I was sitting in the chair ready to take chemo on, when they actually refused to give it to me because my symptoms were too severe, and my body needs time to heal.  So now,  I'm home sitting in my comfy office chair waitin...

Some 40 plus years ago, when my baby boy reached the age of FIVE,  I made him a suit with a fabric full of FIVE's.  He loved that suit and loved the idea of turning FIVE.  What makes FIVE so special?   The biblical meaning of the number FIVE symbolizes Gods grace, goodness and favor toward humans and is mentioned 318 times in Scripture.  FIVE = Grace. The Olympic Games have FIVE interlocked rings as their symbol, representing the number of inhabited continents represented by the Olympians (Europe, Asia, Africa, Australia and Oceania, and the Americas).  BIG part of my life. No. 5 is the name of the iconic fragrance created by Coco Chanel. One of my favorites. Then there is the FIVE second rule!!!!! Today's treatment is the beginning of cycle FIVE of my chemo.  After this I will have one more cycle left to complete this round of treatment.  That means 3 more times in the chair.  Today, FIVE just seems like a big d...

What's your word What's your word? My grand niece ordered for me a very special bracelet to sport what she thinks is "My Word".  It comes from a pretty cool website called  MyIntent.org.  Their mission is to be a catalyst for meaningful conversations and positive energy in the world.   The word she chose for me is Strength. Not exactly the one I would choose for myself but I'm wearing it fashionably and thankfully to remind me to stand strong. Frankly, I need more than ONE word. On my way to finish up round 4 of 6 treatments  I packed all my stuff in my new chemo bag I received for Mother's Day.  My computer, I-pad, wallet, phone along with a notebook, pin and a big tall glass of hydrating water for the chair.  And of course you have already figured out that half of that jug of water ended up in the bottom of my new bag just under my computer.  What would be your word?  My word would be "poot!" Or some other 4 letter word.  Y...

Living in the moment Lets start off with some medical stuff.  My blood work was good other than my cancer marker  C-125.  It has gone out of the 0-35 normal range to 41.  Disappointing but probably due to the still inflamed gut.  I'm positive the next month it will be better.  I am armed and prepared and focused to work hard to stay healthy.  R.G.C.C. (Research Genetic Cancer Centre) has emerged again in a strange way.  For those unfamiliar R.G.C.C it is a lab in Greece claiming to have a vaccine against cancer.  I know personally from the windsurfing world two people that are recipients.  They are being cared for by a person I knew 20 plus years ago who is now a nurse practitioner.  They are doing the vaccine in Texas.  I was informed by my friends that there is a place in Sarasota that will administer the dose.  I'm definitely going to research this more and any of you with input or knowledge of this...

Blessed be my Saints. My last treatment hit me hard.  Easter Sunday I was so tired and NOT hungry.  None of those big chocolate bunnies tempted me.  I consume NO excess calories from SUGAR.  No calories from ANY food for that matter. I kept up my nutrition with homemade bone broth from my niece St. Teresa and St. Sue Chris my daughter prepared for me veggie soup. My tummy still felt funny after a week so I went to my family doctor, Dr. St. Francesca and she prescribed the dreaded antibiotic which has made me feel 100% better. So much better that my energy level has returned along with my appetite. St Greg has proven that he can do everything!  He has shopped, researched good food for me, been a master chef in the kitchen, grown fresh vegetables in the garden and proven he can keep a good house.  He even cleans toilets. What a man! Now I'm sitting again in the chair. This time only for 30 minutes for the immunotherapy drug Avastin.  In and...

What was all the fuss about? It's been a good two weeks and now I'm beginning to wonder why I drug my feet so hard to accept this treatment.  I do have some side effects but nothing bad enough to keep me from having fun and enjoying life as it should be.  I was able to sail in 20+ wind on my new gear, enjoy watching my Granddaughter compete, chase a bird out of the house dying in laughter with Greg be an hour in the gym twice a week, ride my bike or walk the Beach everyday and enjoy our guests at Banana River Resort.  Life is pretty normal.   What was all the fuss about? Today is the day of big doses. I get all three.  Avastin, Doxil and Carboplatin.  This is my 3rd out of 6 cycles.  But....first they are giving me a good shot of steroids and anti nausea med just in case.  The steroids make me wordy and I'm waiting for that to happen....................... Ok. It happened.....here we go!!! Just a small prayer comes to my mind and ...

In an effort to bring some cheer to an otherwise dismal setting, Easter eggs and paper bunnies were hung from the ceiling by some caring chemo nurse.  It's pretty hard to liven up a sterile environment. My chemo nurses are all dressed in sterile gowns masks and gloves.  I call them my smiling killers. They are truly dressed to kill under the hanging decorations. Today is a short attack.  Only an hour.  I'm probably almost finished. So there is not much time to look around.  Mostly people are quiet.  Trying to sleep away the hours.  Today I only get one cocktail called Avastin.  No prednisone to make me jittery or wordy. My last few infusions were done in the same chair by the window with the most sunshine. This day they moved in a bed for some poor person unable to sit up.  I had to find a new window to sit by. There must be 40 chairs in here with may 10 people being infused.  Finding a spot was not hard. So, life goes on. ...