Nineteen and Five....

I have completed 19 of the 35 radiation treatments and 5 of the 7 chemo drips. Wow! Hooorah! Look at that. Boooyah!


Now, for the flip side of the coin; side effects. Those two little words carry quite a wallop. I talked previously about some of them, but the ones that are effecting me the most are the ones located in my mouth and throat. To swallow means to know that whatever it is has passed the parched and bloodied lips, made its way across the front of the tongue which is a vertible field of raw sores, then inevitably touching portions of the "captain crunch" roof of the mouth, then making it past the base of the tongue (more sores) and finally, finally arriving at the entry to the esophagus. Home free.....


Lots of activity in there which is directly contributing to a decline in weight. 


"Ding, Ding, Ding Ding......in this corner, from the LBC, weighing in at 216.2 lbs; the one, the only, Azzzzztec Caaancer Warrrrriiioooorr".  For a bit of perspective, I was at 223.3 lbs on June 15th. The slope is trending down faster as I discover what is manageable in my mouth and what is not. Unfortunately, most items are in the not list as I am quickly identifying a very limited menu. Ensure, Boost and Kawa Maki are quickly becoming a staple. I start by taking liquid vicodin and acetaminophen which deadens the raw nerve ending inside the mouth and down the throat (it takes about 10-15 minutes to work). Tonight, the Chef tasting menu consists of a bowl of blenderized veggie soup, lukewarm green japanese tea,  a bottle of coconut water. I already finished the two tall glasses of blendarized ensure, raw egg, whole milk, peanut butter (no nuts please), a bit-o-whey (1 scoop, 1 scoop only) and some agave nectar to sweeten it all up - naturally of course. My constant companions also include the lip balm, a bottle of ulcerease, some viscous lidocaine, a jar filled with a mixture of water/salt/baking soda, the never ending supply of tissues and a spitoon (cup with butterfly). My intent is not to stop losing weight, but merely to slow down the loss. I get weighed every Monday at radiation, so keep your calories crossed.


On another front, I have the acne under control. The main external skin issue is that it is dry - almost leathery I would say. Mainly on the face, around the ears, down the neck, and on the back between the shoulderblades. I have also seen a change to the fingers - I still have ten, but the skin is now more parched on most of the digits. With all of the dryness, I need to find a gallon jug of Eucerin.


The coundown to July 18th is on; 16 more sessions, 16 more days. My Doctor described the side effects as being roller coaster like with two up/downs (I am betting on being on the second up). If you are looking for something to do, I usually leave the house around 7:00am - 7:10am Monday through Friday and we leave the hospital around 8:20am. If you would like to drive with me from Long Beach to Torrance Memorial, just give me a call. Reservations being taken now.

216lbs are ready for bed...

                                                                                                                                                                                         

A Milestone or Two

Saturday (6/11) we had the honor of attending the wedding of my stepson Jason to the most lovely Ms. Jessica (see picture at right for verification of said loveliness). It was an intimate gathering of family and friends in the hills overlooking the wilderness area of the city of Brea. Although the morning dawned a bit cold and overcast, by the appointed hour there was nothing but sunshine with a slight breeze. A wonderful ceremony with lots of delicious things to eat (I actually was able to taste most of it - really, really flavorful). This is a definite milestone in one's life and the words of Pastor O'Laughlin will ring true. Good luck Jason and Jessica, hard work lies ahead but the rewards to your union will be priceless.

Silent Celebration

My milestone came today after I walked out of radiation for the 14th time. 14, 1-4, Fourteen, One Four. A number by itself no mater how you say it; but when magically associated with "33" - then it is a milestone. "33" is about the number of radiation treatments that I will have within seven weeks. I am at the end of week three, four more to go with about 19 treatments left to go. So although not quite halfway, I am at the end of the third week. Hooorah! The picture is of me after leaving the hospital for my radiation treatment. It is a "Silent Celebration" taught to me by my 4yr old niece, Zara, who learned it a school (one very smart teacher). So, if you are going out tonight, hoist one up and dedicate it to my "Milestone 14". If you are staying home, have a home brew for me. If you don't drink, that's OK because neither do I; so just pass on those happy thoughts and prayers - they are working and I can never have enough. Silent Celebrations for all!

The rash is under control with some wonderful gel that is drying everything in sight. Still red, a bit swollen; but not as "pimply". I have now restarted my moisturization techniques to keeping my skin from becoming leather. My medial oncologist, Dr. Dickey, was really exited to see the rash reaction - I mean ecstatic! Her rational was that patients observed with this particular side effect showed that the chemotherapy drug (erbitux) was actually working and usually showed a higher incidence of cure. Now, the inside of my mouth and throat are a completely different matter altogether. I never thought that watermelon or grapes would hurt; but they do when the inside of your mouth is canker sore heaven. Or better yet, remember eating "Capt'n Crunch" cereal and by the time you finished, the roof of your mouth was shredded to pieces? Well, it feels like I ate the whole box. 

So, I now blend more foods, I like things at room temperature (I think Goldilocks had the right idea), the way I eat looks a little funnier ( I think my tongue "id a dit swallan") and feel like I am swallowing just like a Vermicious Knid. The pain is tolerable albeit different in that it is painful only when I move my tongue, try to swallow or open my mouth - otherwise its great. This leads to more of me nodding and providing facial expressions as my means of communication. My radiation oncologist, Dr. Simko, relates that I will cycle up, then down, then back up and finally down. I believe I am on the first "up" of that cycle. 

Jason & Jessica Odle

Looking forward to my next milestone. 


And here's to the newlyweds....

Ying & Yang

Wesley J. Negrete
2011 Whittier Christian
High School Graduate

YING: Last Saturday (6/4), I was able to witness Wesley walk with his classmates in his cap and gown.......in a word - incredible. The tears were flowing for my son and for one of his major goals in life. I am one very proud papa and I also knew that my "papa" was looking from above and shared in shedding those tears of joy with me.


YANG: Thursday (6/9) turned into a very emotional day for me. The Negrete Family celebrated the life of my Aunt Sookie in the City of Colton and it was, in a word - incredible. The outpouring of words, of feelings to describe her and the life she lead was spot on. It was very moving to see the impact that one woman had over a family and we were all truly family yesterday. Thank you Aunt Sookie, for being you and sharing your life with me. Love, thoughts and prayers to my uncle Chuck and my cousin Damian.


At first driving to my Aunts celebration, I thought how diametrically opposite these events were going to turn out to be. Well, let me tell you how wrong I was. They were in a word - incredible. They both celebrated a life; one that had experienced the utmost, able to have wrung everything possible from every breath she took; another that has the entire spectrum of life from which to experience and make his own . For me, I must go to the wayback machine and remember what were my dreams and aspirations when I walked with my fellow Falcons from Aquinas High School in 1980; making sure Wesley knows that anyone of his (if not all) are possible. I also need to look forward to that ultimate day of my celebration and ensure that my life had true meaning and impact, hoping to achieve but a portion of what what my Aunt did. Thank you Wesley and Aunt Sookie for allowing me to share in your celebrations.


Rad/Chemo: Today (Friday 6/10) was the end of my second week of daily doses of radiation (9 days total - go figure, even this disease was given a Holiday) and my third dose of chemo. I have another five weeks of rad (once a day, five days a week) and chemo (once a week on Tuesday's). Stephanie, Wesley, my Mom and brother Michael have all made it with me to make my daily rounds and my not having to drive is a great benefit! I also found out that my company has approved my medical leave and at the same time I was interviewed by MetLife (insurance carrier for Raytheon's short term disability program). Medical Reform, o where art thou?


The side effects of the radiation have started to manifest themselves; dry mouth, lack of saliva, irritation inside the mouth, loss of some taste and fatigue. Add the ones for chemo (skin irritation - read acne across the "T" zone on my face and upper torso, headaches; but no nail issues yet (fingers or toes - well, except for the fact that I still have my webbed toes; two of them on each foot.....betcha didn't know about that "Gary Factoid"!) NOTE: When Wesley was born, the first thing I checked for were his toes. He had all ten; five on each side and they were appropriately detached and was I ever relieved - thank you God! NOTE 2: It did  make me swim faster! I was a recreational competitive swimmer (no swim team a Aquinas but I did swim for the Orange Otters out of Orange High School in, you guessed it, Orange. I managed to place third at the Annual Seal Beach Rough Water Swim - 1 mile total, from shoreline shotgun start past the breakwater to the end of pier, parallel the each to breakers and back again.


I relate the status of my side effects because I do not want to hide things and I am fearful. I am fearful of becoming someone other than who I am. I am a 48 year old male with cancer. I am taking steps to eradicate the disease (surgery, radiation & chemo, diet, exercise, etc.). I am showing outward signs of the disease -wait, that's it. It's the outward signs, specifically the high school case of acne sign because it is the only real manifestation of my disease (except for maybe my convenient neck crease scar) that is outward and visible. Now, I do not consider myself vain; but it has started to take some thought on my part to not think about my visibly outward sign. Damn, have I now become one of the Househusbands of Long Beach? Will botox be next? How about a bit of lipo after lunch at Roscoe's Chicken and Waffles? Where will it end?


Well, you will be glad to know that it all ended yesterday after I attended the celebration for my Aunt Sookie. The words people used to describe her and her life went beyond her natural beauty and showed me that I am who I am...I just happen to have some additional "facial features" at this time. When you see me, know that it should go away after the last chemo treatment, it is a bit tender and they prescribed  some gel to help, but underneath all those "zits", it is still me - somethings never change.


PS: I loaded my WCHS Graduation pictures on my Facebook page for those that socialize - if you are not my friend, send me a request.

Loss of a Cancer Warrior

Yesterday evening, my Aunt Sookie completed her battle with cancer. An incredible woman who taught me that dancing was an art (same with my other cousins who had multiple opportunities to dance with her) to be enjoyed whether you could (she could) or could not (I couldn't). Like most, if not in all hispanic families, my tio's and tia's are all known by something other than their given names. My Aunt Sookie was born Irene and it was not until my late teens that I found that little fact out.


My thoughts and prayers go out to my Uncle Carlos and cousin Damien. I thank you both for the phone calls and the FB comments. I now am in a position to help others in their time of need and present myself to you both as having an intimate knowledge of what this disease can do to you and what it is to lose a parent. I love you both and will talk with you soon.

Double Double - Animal Style?

Although not exactly "In-n-Out", I did have my own version of a "DoubleDouble" today. There was radiation this morning and then capped it off with the second weekly dose of chemo. What a day, what a day, what a day.

The dreaded "Bell Curve"

Starting off on my journey I knew that there would be times when I needed to buckle down and not allow myself to feel more sick than I really am - I mean actually feel like I was really sick; even though I am. I promised myself that I would do everything possible to make sure that I kept myself at the far end of the curve.  Grading on a curve is an age old statistical method of assigning grades designed to yield a pre-determined distribution amongst all students in a class - a "Bell" curve. After some diligent research, I always felt (and continue to feel) that I had as good a chance as anybody in my situation to be at the far end of the curve. I mean, statistically speaking, somebody had to be there...why not me?


In going through all of the tests, procedures, doctor's visits, all of the poking and prodding, everything with the surgery, all of the searching for parking spots...I willed myself into that top percent. I kept the pain under control, I drank what I had too, gave blood to those who wanted it, stayed still when I was "needled", ate what was good for me; basically enduring whatever was medically required because I knew I desperately wanted to stay on the right side of the curve. 


That is until I started the chemo/radiation. Until then, I was flying. Outwardly, you would not know anything other than I felt good, looked good and was doing really good (IMHO). Now, I am starting to feel some of the side effects; dry irritated skin, dehydration, headaches, fatigue. I say manageable for now, but effects nontheless. 


I still believe that I am on the right side of the curve. Although reality in the form of side effects is creeping into my world, I still feel blessed. Whoa, wait a minute. A curve ball? Not what you were thinking I was going to say, right? Blessed? Really? I have cancer so how could I possibly be blessed? Well, let me tell you how blessed I am. To start, I have all of you. Every step of the way, I have had at least one of you with me. Today, I had my mom and brother go with me to chemo. Yesterday, I had Stephanie go with me to my first radiation treatment. A little while ago I had a great conversation with Wes about the drama around his last days of high school. Basically, I have talked with some of you, comments from a lot of you with thoughts and prayers from all of you. Blessed, you better believe I am - I do. Excuse me, I need to go moisturize.......I need to be ready for my real "Double Double" for lunch tomorrow!