My Great Loves II

I'm a Hard Workin' Man, I wear a steel hardhat. I can ride,rope hammer and paint,do things with my hands that most men can't.

                                                                                                           Brooks & Dunn

                                                                Chris Bonding a Service

    One day I arrived home from Junior High to see a stand out, beautiful 1956 Ford Shortbed Pickup parked out front of our aparment building. It was Red, with lots of chrome, and beautiful lettering on the doors. "NHL Electric, 798-4015". I was more surprised to find out it was a visitor, my adopted step dad had come to court my Mom.

    My mother had married Ike Bonnell in 1961. He was an apprentice electrician, and had told her that he wanted to adopt Rick & I as he could not bare children himself. Both were not quite true. Although he did adopt Rick & I ( Terry Brassfield , my birth father, signed our adoption rights in lieu of 200.00 back support) the miracle was my Mom got pregnant. Even though he had no insurance, Denver General would deliver indigents and they had a friend who could watch Rick & I. The caveat came in the middle of the night a few hours after Mikes entrance into the world. Shortly after Ike had gone to bed, the Arapahoe county Sherriff's paid a visit to Ike. Thinking there was a problem with the baby, he answered the door. He was being arrested. He had failed to explain to my Mom, or the pastor, or the adoption court, that he had a wife and 3 children in Battle Creek Michigan.

    Needless to say he was immediately extradited to Michigan and charged with bigomy, once again leaving my Mom with no way to get the new baby home, let alone anything to wear. She called the babysitter watching us to drive her home.

    The history between Mom and Ike was to say the least, fire and ice. A Bonnie and Clyde like off & on relationship that had us all convinced he was pretty much Satan. Over the years (and trust me, I don't have the time to explain it all) it was a continuous up and down dance that included theft, blackmail, pornography, 2 trips to Jail, several moves across Colorado and a shooting. It also included a strange attraction that kept bringing the 2 of them back together.

    There he was, Mom cooking him a steak and he smoking a cigar. We were to find out later that night that he was kicking his current wife out over the weekend and we were moving in. Of course, we were to call him Dad, and be respectful. Over the next month he cut me a deal. He would pay me 2.00 an hour, save a dollar from every hour and teach me to be an Electrician. This was a great deal! I hated school so badly, I could ditch whenever and I was making money.

    It was over the next 3 years that I developed a Love for electrical work. Although Mom & Nick ( he had changed his name to Nick Long and we of course changed ours) split the sheets, I had a trade. I finally did graduate High School, a year late, and searched out a job as an apprentice. Since 1979, I have worked as an Electrician. It's the best thing I ever received from any "Dad" in my life.I have spent 43 years building, wiring, and designing something by hand. I take great pride in my Blue Collar ability and always have.

    This is the 2nd hardest part of fighting the dragon after the obvious 800 pound gorilla of knowing what GBM is. All my life, I have wakened at 4:00 am and planned a day. Some days are very physical, others are easy but everyday there is production. Going through the radiation and the Chemotherapy, I cannot work. It is the strangest feeling ever.

    We all have work. Whether you go to an office, take care of a home, clean bathrooms, or repair cars we have a task. I miss that the most. It is one of my driving forces through this fight is to get back to being part of a viable work force. My work is my interaction with the world.Its my connection and my very tie to the world.

    If you are suffering through a battle, I am sorry, hopefully, you can get through this and get back to planning your life! If you Love and miss the vitalness of being, hopefully it will be a great motivator for you as well.I focus on the day when I can strap on my tools and do something creative and productive. Here's to the workers everywhere. Enjoy your Day!!

Skip

My Great Loves

I Love Music, any kind of Music.I Love Music just as long as it's groovin'

                                                             The OJays

Hanging on the porch playing the Old Songs

     As I have stated before, growing up somewhat underprivileged, we would get creative with entertainment. Colorado in the summer is very warm and a great source of entertainment for a mother of 4 with limited funds was the flea market. It was a bazaar of the greatest kind , a garage sale with 100s of sellers held at a drive in theater. Treasures galore! Every week from the time I was six, I would do my best to try to find a job or two around the house that would be worthy of a coin or two from Mom and usually on most Sundays, she'd cut loose with a quarter! Now mind you, this was in 1963 value, and buying used junk (treasures). My brothers would go for comic books, or GI Joes,I always had a mission....radios. Transistor radios were still too new for my money but clock radios were sometimes available and people were willing to haggle with a 6 year old.

    They were always my most prized possession. 1950's style, tube type big herkin plastic clock radios. The routine was the same, ask how much, see if you could take it to the concession stand to test it and make your best offer, almost always a quarter.I'd start at a dime but found that if I really wanted it, it was better to come at them full force. I had several throughout elementary and junior high,always upgrading. AM radio was all that we had and I'd listen every night and day to KIMN 95 from beautiful Sloans lake! I loved the soft glow of the tubes as it illuminated the wall behind the radio. I listened to Lulu, and the Righteous Brothers,Stevie Wonder (when he was Little Stevie Wonder), The Archies and 100 others. I was rather obsessed with music. I also have a lucky talent of being able to remember every word to almost every song in my life.

  As years went on and my earning skill improved, I got better gear! By the 3rd grade, I was given a Close & Play record player. This little modern miracle played 45 rpm's and the needle was in the lid. It also played (not for very long) on 6 Dcell batteries. I picked dandelions, did dishes and babysat to increase my personal music library! Tommy Boyce and Bobby Hart, Dianna Ross and the Supremes and lots of Beatles 45's.

    In high school, I had moved up to eight track tapes and LP's. because I worked close to full time I bought a lot of albums. Panasonic came out with a portable stereo that sounded amazing! Elton John Goodbye Yellow Brick Road had to be replaced 3 times. Those, were great music days!

    The problem with LP's is you had to be careful or they would scratch. Or worse leave them in the car and they would warp. If you really cared for your records you had two things, a Peaches Records and Tapes crate to stand your albums in, and a Disc Washer to keep them from scratching. As a working adult I bought the latest technology, A CD player.This was the entrance of the digital age, records that didn't scratch,and sounded cleaner than an LP. It cost a ton but over 10 years, I replaced about 300 albums with CD's.

    Then entered the next musical phase to change my life,the internet.Through the blessing of I Tunes, and digital downloads I was not only able to have all my music, but take it with me wherever I went. Once again, I could take it to work, camping and listen to a track or an album. There were drawbacks, the cost, and certain artists ( record labels) hung on mercilessly to albums I wanted,but as time went on they gave in and I could once again listen to the old songs. I still have and ipod classic with 55 gigs of music that now with the cloud and bluetooth technology, I can listen to anything, anywhere anytime!

    My latest greatest find is a program called "Spotify". It an app that you can download on your phone or IPad and the great thing is you can listen to most albums out there. This has been a boon in my life! As I have gone through the "joy " of battling the dragon, I have become rather reminiscent. I have found the joys once again of Deep Purples Machine Head, Janis Joplins Pearl and Bob Dylans Nashville Skyline, and yes, Barbara Streisand's classic My Name is Barbara. I sit, I listen,sometimes I cry and enjoy the security of my youth.

    Over the years people have asked me why music has always been so important to me, and I could never explain why. One day when I was about 35 it hit me.My childhood was a patchwork quilt of craziness. We moved a lot, had high drama all the time, between social workers, crazy boyfriends and limited parenting skills we were like the High flying Wallendez family. The rules were made, the rules changed, men came and men went. The one constant, the one I could count on, was the radio.It has and still is one of my greatest comforts, and will always be.With my new found Cancer friend, I have actually started to put together my wake list of music, because trust me, a decision like that is important. I will always love music, it's my friend, my memories and my warmth. Thanks for reading my ramblings. Be  sure to tell your caregivers how much you Love them and smile for the rememberance.

Skip

The Power of Love

And in the end, the Love you Take, is equal to the Love you make.

                      Lennon- McCartney

Heather, My Grandson Kesten and Myself

      There are many things that I am still in wonder about in this crazy battle. The top of the list goes to the Love that people share with me. The Chemo/ Radiation roller coaster is one of the hardest physical things to date i have fought. We've had a second adverse reaction to the chemo drug and that takes its toll. The sickness, the total exhaustion and the depression of not going forward is a serious bitch. The positive is my support staff.

    My Daughter Heather puts the "A" in Administrator. I have no doubt at some point in time, she will run Group Health. She is driven and smart and willing to do what it takes all the while balancing a family, oh and helping out the Old Man! When the Rockstar Doctors set up the plan, it requires pretty much daily drives into and out of Seattle for radiation. Heather contacted the one other incredible person in my life that could coordinate a mass ride share program, my best friend, Craig. Craig sent out a mass email and the volunteers poured in. Heather found a great,yet still easy to use program called Doodle (doodle.com) that shows the dates and times and allowed everyone to sign up for what they could accommodate. They called it the "Noggin Nukin Ride-share Program" and within a week 45 days were covered! That's a huge weight off my mind. Mary could work most days and I get to visit with some very dear friends. Thanks to all who have signed up it gives me something to look forward to each day. Those of you who are slogging through this know how nice a little friendly talk can be.

    The 2nd part I want to tell you about is the part that warms my heart everyday. Unbeknownst to me, Heather had written to everyone on the list requesting that they send a note of remembrance and encouragement to me as a comfort. This has been a huge blessing. Every week i receive 5 letters from friends, family, and acquaintances.They are heart warming, endearing,and make me feel so lucky that so many others would take the time to care for me. My greatest strength is the Love of the circle around me and this is a great showing of how far that circle extends.I can't say thank you enough to those that have driven me but more importantly have taken time to remind me why we are fighting this nasty battle, time shared and time to be shared. I will go on to the last skidding breath with the goal of being with the ones I Love, out on the boat with Craig and the band, playing guitar with Keegan, around the fire with Chris and Unclay, or simply holding sweet Mary's hand. As I've said before I am a lucky guy!

    If you are a caregiver, this fairly simple gift is worth more than gold! If you are fighting the dragon I wish for you the warmth that is your circle. Keep fighting the best you can and always smile knowing someone has great memories of you!

Skip

I did not see that coming!

                   I'm so tired, I haven't slept a wink, I'm so tired, my mind is on the blink
                                                                                    
                                                                                              The Beatles

        One of our greatest pleasures, are weekends at the lake. Six years ago my son Chris,daughter Jenae , Mary and I went together to buy a lot in a private camping community. It is an ideal setting for "Grandma Camping", we have a trailer and a shed. When My Sister and her Husband came up they immediately made plans to buy a lot and turn it into their dream getaway. Some of our greatest evenings have been spent sitting around someones fire or trying to out cook someones amazing food. My intentions were to have a safe, secure, 5MPH or less place my grandchildren could make childhood memories at and it has been well worth it!

                                                Brogan Helping Uncle Chris & Aunty Nay Nay

     My Grandson Brogan has the camping bug! This should be a natural as both his mother and father have been avid campers since they were babies. The plan was to meet at the lake for breakfast and spend the next two days doing camping stuff! they had an Ice cream social, a chili cook off, a dance with a live band, Lake Connor Park does it right!  We were extra blessed to be joined by Chris, Jenae, and Nolan! The whole crew was there! We met at the clubhouse at 9:30 and ordered breakfast and were pleasantly surprised when we got back to camp to see Chris & Jenae had everything already set up, water on, propane hooked up and a nice little fire going! Home sweet home!

     Within 45 minutes, I was hit by a wave of exhaustion that I have never felt. I am taking two types of Chemo drugs, a clinical trial, and Temodar, and I am also taking radiation 5 times a week. That along with steroids, anti seizure meds and Blood pressure meds make for an immense amount of drugs. It's not "Fear and Loathing " immense, but their are times when I feel like the floor is floating! I have resigned myself to the fact that I will need rest on most days. " Honey, I am going to go take a little rest", I told Mary. Just an hour or so. I crawled into the bus,turned on the fan and slept. When I woke up I had slept for seven hours.

     I was even weaker than I was when I laid down, and I was starting to feel flu like symptoms, body aches, fever, no!!! Not in July! Fortunately for the other 11 people ,  Chris a a great cook and  had made a most amazing smoked barbecue chicken, with pasta salads and potato salad and other yummy stuff. I sat down at 7:00 and forced down as much dinner as I could. By 8:00 I was falling asleep at the fire pit. I had spent an entire 1/2 hour playing with the grand babies. This was not how I planned the weekend!

    I went to bed and was trying to drink as much water as I could to fight the fever. We have a well oiled machine when it comes to treatment. What we did not anticipate was illness or emergency. We had no tylenol, no ibuprofen, no cold and flu stuff, nothing. And the wave of body aches on Saturday night was more horrific than anything I have felt in 45 years. Remember when you were little and you had growing pains where your knees would hurt or you back or your elbowsThat's what this was. No way to get comfortable and going from terrible excessive night sweats to extreme chills. I got up to go to the Bath house at 4:00 AM and almost fell asleep in the toilet.

    By Tuesdays radiation, the lethargy had continued.We also had added a new wrinkle, a heat rash around my neck and spreading down my torso. Super Radiation nurse Gaia wanted some tests taken and sent me down to ER. I don't know if you have experienced an inner city ER, but it is no picnic. The wait's, the inordinate amount of patients, and the overworked staff make it almost laughable. Please, don't misunderstand me, anyone who opts to work the ER is doing Gods work for Journeyman wages. I was there for nine hours, for 2 IV drips of water and 2 Tylenol, Heather went to the cafe and got me a cheeseburger and fries. The only reason they didn't admit me was Wednesday was my long blood draw day and i was to be back at the hospital at 7:30 in the morning.

     Early Wed, clinical trials had talked to people, they said hold off on the chemo, no blood draw, just radation and Doctor visit. Yahoo!!! a slight reprieve from the 6 blood draw day is almost a reason to celebrate! I opted for a nap. We went in and had the radiation, saw Rock Star Cancer Doc, who informed me that my immunodeficiency system is down and more than likely this could be the flu. However the heat rash is one of the two Chemo drugs. Although my suggestion was flip a coin, his much more Rock Star knowledge was take a break from both, until the rash goes away. Benadryl and a limited amount of tylenol and rest. I told him when it comes to rest, I am the Rock Star! He likes my cancer humor (I think).

     Although it's a minor setback, I am hoping for fairly rapid recovery. I am still doing daily radiation but am wearing a mask when I go to the hospital, you know there are sick people their?Plu the bonus is it keeps those chatty Cathy's in the waiting room from telling you their life story.

      The moral of this story for those of you that are also fighting the dragon or caring for someone who is, is talk to your Oncologist about what med's you can take and make up a small emergency kit. I am sure I could have been much more comfortable had i just thought about it, and think about, you're gonna get sick at some point! Lesson 2, if your taking tons o' drugs you immune system is gonna be down. If you are going to a hospital every day, it's wise to use the masks and hand sanitizers at every opportunity It might save you days of slogging through, and we don't want to waste those precious days!

      To Brogan, sorry buddy next trip Poppa will be feeling better. There are plenty of summer weekends to hike, find Salmon berries and smack each other with pool noodles. We will make it up another time!

This Weight

This weight is weighing on my soul ,And it just won't leave me alone.You know I'm talking about this weight.You know I'm talking about this weight.
                                                                                             Van Morrison

    I was born into a tumultuous family. My mom, was 15 when she married and gave birth to me. In 1962, I was 4, Rick was 3, Mike was a baby and Mom was 19. She quit school in 9th grade, and though an avid reader ( and a rocking beatnik, candles love beads and all) her vocational skills were limited. We were poor. Like eating oatmeal for a week poor. Like "can the kids just sleep on your couch? " poor. Due to lifestyle choices , men my Grandparents didn't approve of, there was hardly any familial help for Mom. But, the beauty of being little is you don't realize any of this. I only knew two things, I was the oldest and to watch out for my brothers.

    Anyone who is the oldest knows what that meant for the next 1 to 40 years or so. I had a job. I was the oldest. I was the Mother hen, circling the playground, making sure doors were locked and rooms were cleaned.Being the oldest brings great responsibility, but also a peace. You are in charge, you take care of tasks, your Mom is happy and the world is good.

     By the time I was 13, I was the babysitter. Mom was working a split shift as a cocktail waitress at the Roadway Inn in Denver and tips were good. I was responsible for dinner, making sure the house was clean, homework was done, and kids were in bed by 9:00. Mom paid me in Viceroys, a carton a week! Make no bones, i was a taskmaster, and I am sure all 3 of my siblings still carry mental scars from those day's, I still have to apologize to Jannelle at least once a year for waking her up screaming "Santa Came!! And Left you a doll! " at least 15 times in August when she was 2, but these are things you do for fun as a 13 year old. For the most part, the house was safe.

    The gift of this upbringing is many. Moving 80 times from birth to 18 gives you resiliency. Material items hold very little value,and of utmost importance, you take care of those you love with a fierceness and a depth that can't be described. Their is a fire in my heart for those I Love so strong it could never, ever be extinguished by anything as long as i breathe.

     Then along comes a new player. Mom always said " as long as you work hard, you'll be successful." Mom obviously had not known about the Dragon. GBM steals  your independence. One day your bitching about contractors and the next day you are not able to drive to Safeway.If you have been recently diagnosed or know someone who has, do not google late stage GBM. It can be an ugly and sobering experience. Blessedly, karma is not always a bitch.

     After 56 years of watching,caring, loving, worrying and being on it in general, I now the care getter.I am the one who is being cared for by so many.

   I hope this isn't as rambly as it feels, but it needs to be said. The dragon can, and may, and probably will come back at some point and I won't be capable of telling you all,how wonderful and amazing and caring you are! I have been blessed with a circle of Love that I literally feel on an hourly basis and it makes my heart want to burst.I have nowhere near done enough in my life to deserve the people that are Loving me and taking care of me. It is the driving factor that pushes me forward in this fight and I Love you all for it. Thank you for your thoughts, prayers,hugs,sacrifices and time to make my life a little better. It's amazing and humbling and I am grateful in ways I can't express.

      If you are one of the unlucky ones, who have joined the GBM club, take time every day to hug your care givers. The weight they carry is immense, and not something they ever expected either.Tell loved one's now how you feel and try to be gentle, steroids suck and you need to be aware that you can get "edgey" for no reason. Forgive each other and try to make them smile!

     You were right Mom, hard work does pay off, but sowing the seeds of Love pays off in spade's.

   

Grey Matter 101- A cancer Primer

    

  Wishin' and hopin' and thinkin' and prayin'....
                                               Dusty Springfield

    Since this is fairly new to me, I thought I'd take a few minutes to advise anyone recently diagnosed or just mildly curious about Glioblastoma Multiforme. I am by no means , an expert on having brain cancer, just someone who is experiencing the journey first hand and will share what I know because this isn't something "well known about"! The way rock star doctor # 2 explained it to me was very articulate and very understandable. "You have a tumor in your right temporal lobe. Now we are going to do our best to take it out, but with this type of tumor, it's like grains of sand on a marble counter-top, There's no way to guarantee we can get it all."

     Glioblastoma Multiforme is a fairly rare cancer growth somewhere in your head . GBM accounts for about 15 percent of all brain tumors and primarily occurs in adults between the ages of 45 and 70. Its a very aggressive cancer and life expectancy rates, none too pretty. You can start to see the problems cropping up here, invasive, aggressive growth, in a very tight skull area,means thought processes can be disturbed! Depending on where in your head your little Dragon sets up shop and how voracious it is...well let's don't go there. In my case, my choice was to hit it with all I could.

    After 3 weeks of allowing my brain to heal after tumor removal, Rock star doctors 1&2 ( did I tell you I am a lucky guy?) suggested we hit this from 3 ways. First, a clinical trial. If you are diagnosed with GBM stage 3 ,or better yet stage 4 (I am an American!!!) and you can get into a clinical trial do it. Although somewhat risky, these are the trials that will find the cures or at least elongations for other GBM sufferers. The Temedor regimen ( Chemotherapy drug )I am taking was once a clinical trial and is now shrinking tumors and allowing people to survive 3-6 years. I tell Mary,"I'll be a lab rat for a shot at 3-6 more years! Just let me know if I start growing a tail" The third punch is radiation treatments. Remember all those years of worrying about Xrays at the Dentist or the Doctors office? You never have to concern yourself again! I just go in to a room where someone who is much smarter than me, and hopefully a much more accurate shot, shoot's "Frikkin laser beams" into my head! This is to radiate any growth of said Dragon! I have been staring in the mirror for a week trying my damnedest to get my best Jack Nicholson post Mac Murphy look so I can freak out some of my friends who are driving me! It's the little things i tell ya!

    This regimen will go on for a total of about 45 days. So far, not bad. They tell me some people wear out as treatments go on, but I am blessed to be Clydesdale strong in my resilience so far and I will push as hard as it takes to stay that way. I have so many great friends and caregivers that rides to the hospital are not a problem. Thank you all again! Yet, another sign of the genuine Love and Goodness of the people I am blessed with. I have cried more out of thanks and appreciation than I have over the diagnosis! Great people rock!

    After the Clinical trial, the Chemotherapy, and the Radiation, we wait. We wait 2 months again for recovery ( that's a lot of toxic shit going down) and then we MRI. The diagnosis all GBM patients want is simple, no change. No change means we beat back the Dragon, at least for a while and my life goes on. I get to go back to work, play with my grandbabies, and think about important stuff like why is a cup of coffee and a bagel $6:00  at Starbucks?

    If you have been recently diagnosed, I am so sorry. It's a serious heavy load and all I can say is realize how precious every day is! You did nothing to "deserve" this, It's like that cousin you have who tans out every year while you burn and peel, some people are just lucky. But fellow cancer patients, you can face it with a smile and bravery....and lot's of deep breaths.

"Celebrate, celebrate we will... cuz life is short but sweet for certain"
                                                             Dave Matthews