Now that was Rad!!

That's Rad for short. My first dose of radiation today and boy are my arms tired! Seriously, the picture is a representation of the radiation machine that I am to become intimately familiar with over the next few weeks. I am scheduled for once a day, five days a week, for a total of about seven weeks - so that's 1 down and about 31 to go. The session lasts about 15 minutes and I get to wear my mask. A computer guides the machine as it rotates around my head and neck while I am on the table, prone and stationary; very, very stationary.


So now the big question: How do I feel? "Not sure" is my first response. Apprehensive? Tired? Bored? Scared? Confused? Confident? Alone? Empty? Again, not really sure. I am about to embark on the second major leg of my journey and I am not sure how I feel.

I often think back to that day in January when I first felt my lil friend on my neck. That thought then naturally flows to the news from my doctor that the biopsy pathology result was positive for Squamous Cell Carcinoma - referral to an oncologist - my world is rocked - things would never be the same again.....


So here I sit, typing on my blog (never thought I would have one with this subject matter), eating turkey burgers, lots of veggies, hummus, fruits and nuts, yogurt, along with plenty of vitamins and supplements. All consumed (along with much more) in order to make me stronger, more healthy and better prepared for my battle with cancer. I weight less and can do more yet at this moment, I am not sure how I feel. The preliminary effects from the Erbitux treatment last week are starting to manifest themselves. Most especially is the total body dehydration and breaking out on my face and upper torso. I have switched moisturizers  (again, never thought I would be typing a sentence like that) to try and get ahead of the dryness.

I await pensively for tomorrow to come as I get radiated at 8am and dosed with chemo at 2pm. I will endeavour to feel more "sure" because I am tired of that not sure feeling. Here's to being sure.

E-R-B-I-T-U-X, Erbitux, Erbitux, Rah, Rah Rah!

First treatment for chemo (remember that my drug of choice is Erbitux). A bit of a mix-up at the treatment center since I had not been scheduled for my "Day of Learning". They were about to chase me away when we had a lil pow pow and they saw the error of their ways, walla! Put in the IV and hang the bottle, drip drip drip. A mere 2 hours later and a viewing of "Goal 2" the movie and I was done.

I am feeling a bit "fatigued" but not in the normal sense that you would equate to being fatigued. It's a little bit funny (thank you Sir Elton), strange in some ways, very different in others. My apologies for the lack of adequate description but I am working to understand it and will report back as soon as I achieve that lofty plateau. I am scheduled for another "Balthazar" of Erbitux next Tuesday and will also start my radiation treatments (once a day, five days a week, for 6.5 weeks) that same day.

My journey is on its next leg......so much has changed since the beginning of this year. Thank you all for the cards, texts, emails, phone calls, prayers and conversations - it has meant the world to me. Thank you, thank you, thank you.

Tortillitas, Carrot Cake, Tamales, Oh My!

My first dose of chemo comes tomorrow. I stand afraid only of that which I do not know yet strangely I feel at ease about tomorrow. Is it because I will get my first dose of what will be a number of "drips" of poison? No, not really. Then could it be that I will soon be subject to a huge amount of "grays" (Gray (Gy) is the unit of absorbed dose of radiation) centered around my head and neck region? Nay, nay I say. Ok, so how about the side effects of chemo and radiation? Yes, yes, yes. Now we are getting warmer. 


Specifically, the acne? No, I survived high school so this should be a breeze. Maybe fatigue? Naw, I power napped through law school so this will not present an issue (remember IRAC?). How about the loss of a few lbs? Currently I am pushing 225lbs on my 6' frame so that puts my BMI still to high... I know, what about the soreness inside the neck or throat area that is being treated? Although it may be severe, it is to be expected with my condition and I can deal with it. That leaves the damage to the salivary tissue that will lead to dry mouth and altered taste. Ah, there it is. Dry mouth? Maybe secondarily; but primarily, numero uno, number one, top of the heap, the big dog is..........altered taste!


I don't have the most sophisticated palate known to man, but I do know what I like. And some of the things that I like.....


My Dad's carrot cake


Our tamales at christmas


Menudo (equal mix of tripe and hominy (aka nixtamal), add a bit of oregano, red chile flakes, diced onions and lemon )


Chicken, Juan Pollo (http://www.juanpollo.com/)


Tortillitas that my Mom makes (with Pico Pica)


Tapioca pudding


Lobster Tails, beans and tortillas from Puerto Nuevo, Baja California Norte, Mexico


Michael's Cowboy Beans and BBQ Turkey


Mrs Knott's Fried Chicken (the best for breakfast)


Chaufa de Pollo from El Pollo Inka (http://www.elpolloinka.com/)


My mother-in-laws bean soup (with a real ham bone)


Mac n Cheese


Sardinetas and fried peppers at the counter, Cal Pep, Barcelona (http://www.calpep.com/ingles/ingles.html)


Fresh Oysters at Pascal's Manale, New Orleans (shucked by Thomas at the oyster bar and just about any other food items in town...) (http://www.neworleansrestaurants.com/pascalsmanale/menu.html)


Fresh greens, tomatoes with white beans and tuna, Panzano in Chianti, Tuscany Region, Italy (accompanied by a nice bottle of Il Poggio Castellare Brunello di Montalcino)


Anything cooked while camping


.....and these are but a few of my favorite things. Some I will never taste again, while some I have tasted more than others and a few that I will have the opportunity to taste again. 


But the real question is, I mean my one and only question is, will some of my favorite things taste the same? Or will my memory have to be my new taste bud? That is what is going to be the toughest "pill to swallow". Gulp.......

Taste Buds.....

The Radiation and Chemotherapy report is in. 


I will have radiation treatments once a day, five days a week for six and a half weeks. The chemo will be but a "chaser"  to the radiation and administered once a week. I start next Tuesday the 24th with a round of chemo and then have both treatments start in earnest on the following Tuesday the 31st - week 1 of 6.5 


Chemo: I will be taking the drug Erbitux which is a chimeric (human/heart) monoclonal antibody and epidermal growth factor receptor (EGFR) given by intravenous infusion - wow, what a mouthful! Basically, because I tested positive for the Human Papillomaviras (HPV), I am eligible to take Erbitux. You may be asking yourself, "Self, is this good news?". Well Self, let me tell you that it is a good thing for Gary. The Erbitux has shown to be just as effective as the other chemo drugs, but with less side affects. So for me, right here, right now... less side affects is a great thing.

Radiation: I felt like a superhero when they fitted me for my radiation mask. It has a hard plastic frame around it, with a rubber membrane stretched across. It was dipped in hot water to make it pliable and then placed on my face and upper torso to form a mold/mask you see in the picture. They then took a CT scan that will be the basis for my radiation plan. I was so excited about the mask an asked it it was mine, like in mine to keep. They look at me a little weird and said yes. It reminded me of my brother when we were in college in the early 80's and he had an art class that required him to cast a bronze face. Well he needed a model so guess who got to volunteer? We were at my Aunt Chavela's house and he whipped up a batch of casting goop, oiled my face, put a couple of straws up my nose so that I could breath (nice of the artist, don't you think?) and proceeded to goop me up. It took few minutes  (like 20!) to set and presto, a bronze masterpiece!

Latest Status

Working my way from the last post, here is the latest and greatest:

Friday 5/6: I saw my radiation oncologist Dr Simko. Great session, lots and lots of info. The requirement for radiation is to deal with the remaining cancer cells that are at the microscopic level that could not be removed via surgery. Currently, the plan would be once a day, five days a week for six and a half weeks starting in about two to three weeks. I also was referred to a radiation dentist to deal with any dental issues prior to radiation.

Tuesday 5/10: Had my post-op with my surgeon Dr Sercarz at UCLA. Best news was that there was an addendum to the surgical report which showed me as testing positive for HPV. Tadaaa! This is big news because cancer patients that test positive for HPV are associated with positive therapeutic response and survival compared to those who test negative.

Next visit was to Dr Rodriguez who was approved as my Prosthodontist (specializing in head and neck anatomy) and treated me in anticipation of my radiation treatments. Wow, wow, wow. I had no idea how much radiation effects my teeth. i will now have them cleaned every three months for the rest of my life. I will have fluoride treatments for the rest of my life. I will work to not have cavities for the rest of my life. Lots and lots of for the rest of my life as my ability to heal from a dental issue will be greatly diminished. I had x-rays taken (digital for all you techno geeks), two sets of impressions, digital pictures and all I have to show for it is a sore mouth and jaw. But I am ready in record time for radiation.

Upcoming: An appointment with my medical oncologist to discuss the possibility of adding chemotherapy to my surgery and radiation treatments.

My journey continues....

Convenient Neck Crease?

I received a copy of my surgery report. It seems that I have the distinction of having a "...convenient neck crease...". After all these years, who knew? I could have been the most famous neck model in the world (or at least in San Berdoo). I mean, my own fashion line of neck wear, possibly an ascot, a turtleneck, a "dickie" maybe. Wow, all that time spent going to school and come to find out that I have a convenient neck crease!


I continue to be sore around the incision and feel some "numbness" similar to what you feel when the dentist numbs your tooth with novacaine. Apparently my twelfth cranial nerve and the adjacent vagua nerve must have been disturbed but preserved and I am thinking that the spinal nerve also had to identified and avoided, although I am sure that it was also disturbed somewhat. What I am really feeling is the actual "pain in the neck" when I turn to fast because according to the Doctor, will take a while to return to normal.


There is that word again, normal. Two syllables. Easy to pronounce. The average or mean; free from any mental disorder; usual, not abnormal.  Is that what I want to get back to? Do I want to be normal? Was I ever normal before? Do I want to go back to my normal or to another normal? Are any of us really normal? After that, it's not so easy to pronounce anymore. 


All I know is that things are different. I am different. Obviously different in the physical sense but also different because I have started to ask the question of "why me?". Statistically speaking, my type of head and neck cancer accounts for about 3% of all cancers and I have the distinction of having an "un-known primary", which occurs in only about 5% to 10% of folks in that first group. 


With that said, I now proudly state that I am a part of a group of folks that are quite unique, some would say maybe not unique but rather a bit "abnormal" (those of you that know me already knew that I really wasn't quite normal). And you know what, I am proud of it. So it is no longer a question of "why me?"; but rather one of where are the others that are like me?

Gary Unplugged!

Although I would love to have an acoustic session on my blues harmonica (bucket list #22), my surgical drain tube was removed today. My surgeon, Dr Sercarz, is on vacation so one of his residents, Dr Duarte, was tasked to remove the drain and pronounce the pathology results of the surgery. Drain removed and survey says:

- 25 lymph nodes removed during surgery; 24 negatives, 1 malignant (approximately 5cm)
- All biopsies negative

It was such a wonderful feeling to be free of the drain, my constant companion for the last six days. Every day since the surgery I have felt better and better, stronger and stronger. Two partial baths (couldn't get the neck wet) were really not enough as I began to understand how ripe I could actually get over the span of those six days.......wow!

On a more personal note, I had the opportunity to go with my mom to her church and receive the gift of the Anointing of the Sick from Father George. Although I was born and raised Catholic, I cannot express the emotion I felt as Fr. George lead my mom and her friend in prayer, anointed my forehead and palms of my hands. I discovered that Saint Peregrine is the patron saint of those with cancer and has a shrine at the Mission in San Juan Capistrano. Road trip! Powerful.......

On to Phase II: appointment with my radiation oncologist to determine what protocol to use is scheduled for this Friday. Back at work tomorrow.

Please keep in mind my request to keep on eye on Stephanie, Wesley and my mom. They have done so much for me these past few months that I want to give them everything that I can. So I am reaching out again to you to keep them in mind. Wes just went to the prom and had a blast. Stephanie is juggling a new job and my health at the same time while my mom worries enough for all of us (she was very surprised to hear I am going to work tomorrow). Start with an email, maybe a phone call, lunch or a movie (remember that the popcorn is delicious but highly caloric). Just something that is not directly cancer related, I have got that part covered.

Post Surgery

I was released on Thursday in a relatively quick and simple process. The rest of the day went relatively quietly with the pain hovering around a 1 (out of ten) and the soreness reaching an all-time high of about 9 out of 10. Not sure how that works (anesthesia maybe?); but it was a full body soreness that started at the bone and worked it's way to the surface of the skin, from the neck downward to my calves.

We walked to our local bistro (Sipology Red) for a bit of dinner. On the way back I experienced a chill but the soreness quickly took care of that. After a fitful nights sleep trying to get comfortable with the drain tube, Friday loomed large as I had received permission from my Doctor to attend a soccer conference that had been in the planning for over a year and that I had responsibility for some coaching modules and a general session. Although I had arrainged for coverage once my surgery was scheduled, I held out the slight hope of being able to attend in person. As things worked out, I was able to attend and lead the Friday general session (there were some astonished looks from my colleagues who knew of the surgery) and then make it back to the conference on Saturday with a visit for pictures to see Wes and his date before the prom.

Sunday dawns with one last coaching module that I co-lead (Under 5 year old players, wow what a concept!). I am now at home, awaiting the Tuesday morning appointment for the removal of the drain tube and return to work. Except for Tylenol, the big gun pain meds remain in the prescription bottle - their possible need waning with each day.

My warmest and deepest thanks to all involved (in every aspect) in the surgery and the post surgery recovery. Your thoughts, your prayers, your good light all went towards ensuring a successful surgery and I cannot thank you enough. You all manifested yourselves when my surgeon came down to the waiting room to deliver his post surgery report and was greeted in person by eight people. It felt like those eight (Stephanie, Wesley, my Mom, brother Michael, aunt Chavela & uncle Peter, cousin Kim and sister Debbie) were backed and supported by the force of all of you so that the feeling was nothing short of overwhelming. Again, thank you all for that overwhelming support as I know it is the foundation on which I have built my plan to deal with my situation.

I love you all.