Happy New Year

Should auld acquaintance be forgot,
and never brought to mind?
Should auld acquaintance be forgot,
and auld lang syne*?

For auld lang syne, my jo,
for auld lang syne,
we’ll tak' a cup o’ kindness yet,
for auld lang syne.

Robert Burns

     Ok, I'll admit it, I am a Wikipedia junkie. I have been since I was a little child. No, no that's not true, when I was a little kid we didn't have the internet, we would go to the library and research, but Wiki is so much easier and right here in my smartlaptoptablet thingy! If I want to know about say, Hank Williams, or Billy Holiday, or "What did Marco Polo do that made him famous?" it's all on there, subject to verification of course.It's probably where all of us looked up Teddy Kennedy and his GBM and it's always fascinating.

    This morning as my brain rambles through many things ( the beauty of ADD is you can and usually do have a brain that rambles through many things), I was thinking about New Years Eve and 2015 and of course, got the song above stuck in my head. Where did this originate and what are the words? Wikipedia to the rescue! It is a very old Scot tradition. Groups circle up, cross arms and hold hands as they sing it. At the end, they all come to the center of the circle,hug each other and wish each all happiness and health in the New Year.

    What a wonderful tradition! After the craziest year in my life, nothing sounds better than wishing each other that we forget the past, and hope for a great future. Holding hands with those you Love and sharing a great fellowship.

    As we enter the year 2015, let's all share our Love and kindness with those around us. Lets hope for each other a positivity that will keep us full of  happiness good health! Let's hope for great medical research and mostly, a cure.

    Again, thank you for reading my ramblings. You have all blessed me so much with your information, Love and carings. Know that whether I am fully mentally here or partially, I still am glad that I have been able to talk and share and be a small part of your life.

Should auld aquaintence be forgot and never brought to mind
Should Auld aquaintance be forgot in days of Auld lang sine
For Auld Lang sine my dear, for AUld Lang sine
We'll take a cup of kindness  yet
In days of Auld Lang Sine

Hug each other, forgive often, and know that you are blessed for every day you breath!

Happy New Year!!!

Skip

Back to the salt mine

You load sixteen ton's and what do you get, another day older and deeper in debt. Saint Peter don't call me cuz I can't go, I owe my soul to the company store.

George S Davis

     My Grandad was a working man. He was a beet picker as a kid, working in the fields from the time he was 12 and because he had a sixth grade education, as a man, he became a machinist. Machinist's are precision, and quality masters. They measure things with micrometers and are very committed to preciseness. He took great pride in his craft, and I feel he was the reason i have a strong work commitment ethic. I Loved my grandad and his strong German pride! He was a great role model for us growing up.

      
       As you may have noticed, I have taken a little break since the great Fundraiser/Party our dear friends put together.Two reasons for this. First, our second MRI came back and it also was clear! Now we wait 2 more months before our next MRI, still taking the Chemo, still taking a myriad of seizure meds, BP meds, and various other meds, but getting by.

      The second reason is I am finally getting back to work!!! I never thought we could get back to the simple blessing of normalcy, but I am glad to say we are working into it. There are a few things that I didn't expect that I thought I would share, just in case you have cranial surgery and Glioblastoma at any time in the near future. Consider it a "Hint's from Heloise" moment!

    Every Brain patient is different! Depending on where and to what degree your tumor is, you are going to have some issues. This could be as simple as short term memory, or full blown anxiety attacks. You need to be patient with yourself, and ask your co workers to be patient with you! Remember, while you were off work fighting your Dragon they were still in full blown work mode. Just remind them, you are coming back and trying to work up to speed as quickly as you can. They will understand! 

    Secondly, try to give your self a lot of room! This is because we need rest and time to continue to fight! This cancer stuff will take it out of you, and if you are trying to do too much it will make you rest. One of the best pieces of advise I received was to rest before I got tired, by the time I knew I was tired, I was also completely worn out.

     The Good news? It gets easier every day. I work a physical job, and at first it was difficult to get the energy. but as time goes on, it gets better and better. You'll still be tired and worn out by Friday, but it gets easier as time goes by.

     The Great News? I am back working with some of my dearest friends. I am back to looking at jobs and figuring things out. My brain is doing what it's supposed to,although not always speedy, it is thinking about something other than the Bitch that is Cancer. If you have worked your entire life, having something to do makes you feel whole. It's great to strap the tools back on and get back to thinking about something other than negativity. Here's to all of you that work and Love it! Keep it positive, it's not always easy, but it certainly is a large part of who we are! Enjoy your week and think good thoughts. Hug your babies every chance you get and forgive often and gently!

Skip

Charity In Motion, Unselfishly Giving

Oh I get by with a little help from my friends,
Mmm,I get high with a little help from my friends,
Mmm, I'm gonna try with a little help from my friends.

McCartney

    From the time I was a child, one of my Mom's lessons was that no matter how little you have, you need to give back. " Even if you are poor, you share what you have with those less fortunate." We gave at Sunday School, Vacation Bible School, and we collected for UNICEF at Halloween. It was a good lesson, because when you are closer to poverty, you understand how much more is needed by those who are truly impoverished.

    Growing up we mostly took. We were "welfare kids", and we received. I would go to the school office on Monday morning and pick up Blue lunch tickets for the week. They were for the free lunch program. We wore, for the most part, Clothes from Goodwill. Even the small amounts of cash that Mom could scrape up was by buying my grandmothers groceries with Food Stamps and Grandma would reimburse her with cash. At Christmas, they had a place called " The Santa Claus shop". If you were struggling, they would ask how many kids you had and give you "Santa Buck's" for a small shop, of donated toys.

    When I grew older, it always stuck with me, the need to give back.I wanted my children to know how well we had it. Every year, we would donate to Toys For Tots. Every Christmas we would teach the kids about giving to those who were less fortunate and I would vehemently defend single parents struggling who received charity, so quickly cast off as Welfare people. I didn't do any great acts, I was trying to raise a family myself, but I knew my personal life was much better off than my mom's and I wanted to teach what charity was with my children.

    About 8 years ago, I met through my Friend Pat Looney, a group of people who are walking the charity walk. They are a local group of guys and women called The Lake City Western Vigilantes. Originally it was a group of local businessmen, who could quickly be deputized and called into service to help the Police in Lake City Washington. Secondarily, they would dress up like cowboys at local festivals and raise money for kids in need in the area. As time went by they we were no longer needed to help the police, but the group became closer and fundraising became the main goal. 7 years ago I joined this great family to raise money for kids and share quality friendship time. They are my second family and dear friends with truly Hearts larger than most.

     One of the hardest parts of having a life altering ailment, is just that. It alters your life. The day I had my seizure, my world went a different direction. I was hospitalized, had surgery and could not see going back to work for a while. I was somewhat a captive as I recovered and went through treatment. GBM has two sides, the recovering and hoping side, and the getting worse side. Either side is tough on all. What i didn't expect was the depression side. As you wait, you think. And as you think, you miss the life that is going on around you. I have missed Summer. Weekends at the lake, time with my Grandkids, Trips on my friends boat,and raising money for kids.  I know it sounds trivial but when you are going through Chemo and Radiation, you need a lot of sleep and its the hardest thing for people to understand, because you look so normal, but you feel so lousy.

     As Summer comes to a close, a friend of ours, Kristy Hill, decides we need an end of summer party. A chance for us to get together with the Vigilante family and have a barbecue. It will be easier on me as we can have it at the lake, so I can bail back to the trailer if need be, and still hang out with everyone. I was looking forward to it.

    The day was saddened a bit as we attended a memorial service for a friend who had passed away. It was a beautiful service and well attended. After we headed up to the lake. I took a short nap as Heather and Mary made coleslaw and went down to the party about 6:15.

     I was completely surprised ! Instead of 30 or so people, this was closer to 150 people! It was a surprise benefit fundraiser for me! I have never in my life had a surprise party! There were people from work, contractors I have worked for, Friends from the brewhouse, and my dearest friends, the Freebergs and the Stewarts. There were Pirates, there were retired Vigilantes,there were Lake Connor friends and more!

    I was humbled and thrilled at the same time. Not only had so many people came out to celebrate, they had a full blown auction to raise money.Kristy had contacted the lady that owned the trailer we were planning to buy when I had the seizure, and she made a deal to help us out as well! Chuck Mellinger is a great auctioneer and with so many being so generous, not only did we raise enough to buy the trailer, we made enough to put a dent in our medical expenses at the same time!What an amazing night! People brought food, the brewhouse brought beer, everyone was so generous and we felt incredibly blessed!

     I believe in the circle of life. I have been blessed to watch it go round, to go from child to adult, from adult to parent, from parent to grandparent and now to the autumnal side. But nothing will ever warm my heart like the unselfish caring and giving of friends. Thank you seems entirely too contrite, but i will tell everyone thank you personally. Until then, let me tell you all how proud I am to be your friend. That you are the type of people I want to be, a giving loving wonderful ball of family taking care of others unselfishly. You are the glue that is holding this fight, and this lucky man together. I Love you all.

Skip

Annnnnnndddddd breathe!!!!!

An MRI contrast scan

    Yesterday was a very anxious day. I had read many peoples post's regarding "scanxiety" when you get your MRI, let me tell you, it is very real! It started about Friday when the reality set in that we were going to have to see real evidence of what was happening in my head. As the weekend went on, I grew more concerned and moodier. The fact is, it is much harder than I thought to stay positive as the inevitable grew closer..... Me! The most  upbeat, laugh at death person, was starting to dwell on the negative. I had read a post regarding the toll that Chemo and Radiation takes on your brain and that combined with the unknown of status of the Dragon was almost too much.

    Thankfully, my support crew lifted me up and helped clear my head. I went in apprehensively but positive.I was surrounded with Love ( and nervousness) and we went to the hospital.

    Now, If you are going through this, a little bit of advise. When they ask if you want music, take it. The last MRI I had was noisy , uncomfortable, and claustrophobic. I seriously wanted to escape! This time with the knowledge of the experience, I was prepared. The Billy Joel playing in the headphones somewhat quelled the endless droning noise of the machine. Also realize, 15 minutes in there feels like an hour so just lay back and relax.

    With that task out of the way, we went to see the Rock Star Doctors. As always, Dr one is prompt, talkative and nice, but very curt. I couldn't look at the monitor as he went into the scan, so I watched Jenae's face. I knew she would know what she was looking at. Finally, I saw that ever pleasant,oh so familiar smile come across her face! " It appears that there is nothing here, but signs of a surgery" Rockstar said. So no growth? "Nothing" said Rockstar! This is the best news possible, and after some maintenance instructions, the Dr shakes our hands and leaves. Mary hugged me, Heather hugged me and we all sighed a great sigh of relief. We left the hospital knowing that we were on the path we desired the most.

     Please understand, this is not nearly the end. Glioblastoma can and will rise up again at some point.We will continue to take the Chemo and other myriad of drugs. But today, the battle was ours. All the trips to the hospital,all the radiation,all the sickness went rushing out of me like a woman who has given birth and forgotten the pain! I bought a little more time! I went to a little bistro with my three favorite ladies and toasted a victory. Life is sweet and not quite as short for certain today !

    Again, thank you all for your strength and passion. Mine is but one small life blessed to be touched by all of you. The thoughtfulness and kindness you have all gifted me with restores my strength and will to go on! I can never say it enough.

    As always, hug each other and forgive easily, and take an extra deep breath of life for me!

Skip

Chemotherapy and Radiation, a Love/Hate Relationship.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I've been prayin' for
It's gonna be a bright (bright), bright (bright) Sun-Shiny day.

                                                                                 Johnny Nash 

Finally finished with the Radiology!

    On Wednesday, we reached the final goal in round two! We said goodbye to our old friends, radiology and chemotherapy! It is a great physical relief to have this process complete! We celebrated with Family most of the afternoon, and though it meant napping most of the way home, it meant many sigh's of relief as well.

    FYI... GBM (Glioblastoma Multiforme) is the most aggressive form of Cancer there is. Most people find out they have a brain tumor, have surgery to remove as much as they can, and then SURPRISE... it grows back! The standard operating procedure is to let your brain heal, usually 3-4 weeks, and then start an aggressive battle with a combination of tactics. We chose (who am I kidding, the Rockstar Dr chose) Radiation, Temodar (Chemotherapy), and a clinical trial. If your going into a fight, take the biggest guns you got!

    After a week or so, we had an adverse reaction to the clinical drug. This was not fun (as I wrote about before) but the Dr's were quick to cut our losses and gave up on that sticking with the other two. After getting back on track,we set about our pattern.

    Everyone who goes through this process will have a different experience. I have found what I feel is a great resource for me on Facebook. It is called https://www.facebook.com/groups/gbm4cure/. This was the best and at the same time the worst thing I have ever read, and do not recommend it for anyone who is mildly inquisitive. It is a sometimes happy, sometimes incredibly sad look into the world of anyone who is dealing with GBM or loving someone who's dealing with GBM. I could only read a little, then cry and look away. Over a couple of weeks, I built up the callouses in my heart and found that most of these family's are reaching out to each other for advise, and comfort, and celebration. It's been a source of strength and sadness. Mostly, a kindred-ship of a family unlucky enough to have to fight the horrible Dragon to lean on each other.

     I am lucky, the toxic combination had a fairly small impact on me. I had to be very careful about when I ate, what I ate, and making sure the medicines were on schedule. Other than that, I learned what the definition of "Fatigue" was. I was tired everyday. I came home, ate lunch and slept for 4 hours every afternoon. I would progressively, go downhill as the week wore on and slept most of the weekend. By Monday, I was better and back to fighting again. Luckily, no sickness, minimal pain and generally just worn out.

    The Silver Cloud? It ends! After 4-6 weeks, they give you your final treatment, tell you take 3 weeks off from Chemo and send you away from the hospital! I feel amazing! Afyer the first day, you feel like that Claritan commercial where all becomes incredibly clear. I also have my energy back! I am not foggy             ( Although I will still use the excuse, hey, It's Brain Cancer!) and I am able to eat when and what I want. Life is good!

    If you are in the trenches going through this, I am sorry. Its not easy or fun, but it's your best and first shot at beating back the Dragon. Just know that there is a little light at the end and battle on. We will get the MRI on Sept 10 and I am sure the scanziety will kick in before then but for the next few weeks, I will cook for Sweet Mary, play with my sweet grandbabies and hang with good friends in the knowledge that Dave Matthews is right, Life is short but sweet for certain.

    To all my friends, thank you for sacrificing and driving me, writing me my beautiful letters, and just being the amazing people you are. My family...this "struggle" is just proof that our Love holds no bounds. You set down your lives and carry me when I am weak. Our bond is eternal! Thanks All. Hug each other and share as much Love as you can.

   Skip

My Great Loves III

They are one person, they are two alone, they are three together, they are four each other.

Crosby Stills Nash and Young 

At the Old House

    I was so anxious to move out when I graduated High School, that I had actually put a deposit on an apartment the week before I graduated. I was working full time and move into my own place the weekend after graduation. This.... was heaven. Solitude. I could buy cookies, or coffee and it was still there the next day! I would put away records and they would stay in the jackets! I could just enjoy my private, personal life.

    There was only one problem. I had no concept of budgeting or planning . I would get paid, party hard , and be broke by Monday! It only took me till August before I had no phone, no power and no real food to speak of. Luckily, a friend of mine from DECA was working at a restaurant. Her name was Heather ( she is the reason I named my Daughter Heather because she was beautiful and kind and I liked both trademarks) and she arranged for an impromptu interview with the manager. If any of you ever worked at a Sambos or a Denny's or a similar all night restaurant you know you don't need a lot of skills! I wore my best Disco pant's and polyester shirt ( Angels Flight, google it) and was hired immediately. I was a host. My job the first night consisted of sitting drunk guy's in the cute waitresses section and drunk women in the hot waiters section! It was easy, busy and time flew! I would pour coffee and by 4:30 a.m. I had earned a free meal and a $5.00 tip! I walked back to my apartment, stopped by the 7-11 for 8 ounces of Folgers and a pack of Marlboro's and quickly fell asleep in the happiness of simple capitalism!

     About 2 weeks later, as the bar rush hit, two very attractive ladies were seated in my section. I introduced myself and met my true companion. Her name was Mary Bodey, she had moved to Colorado to go to college, and she had the most beautiful eyes I had ever seen! By the fact that she returned and ate scallops almost every night for a week, I assumed she was interested as well. Eventually, we started dating and within a couple of months, we were living in sin. After all it was the Seventies!

    As I came to know this lady, I realized one major factor. She was everything calm, that my life had been crazy. She was raised, in the same home, by two parents, had always gone to the same school and had a depth of spirit that could slow my madness down and make everything right. And even bigger than that, she had a depth of Love and loyalty that I had never known.In a matter of months, I knew that at any time,she would take up her sword and protect me, right or wrong, and it gave me a whole new outlook on my life. We married on June 23,1979.

Mary 1979

    It took us 4 years, but finally we were blessed with the birth of our son Christopher. He was (and is) an amazing constant source of joy. 13 months later, the delight of my life, Heather came into the world. We had the perfect circle. Life was a blessing as I finally became the Father i never had.

    In 1987, the oil boom in Colorado had hit the skids. It was hard times and work was scarce. We finally bit it, took out bankruptcy and decided we needed new horizons. We were down to 3 choices and after much discussion opted for Seattle. We sold most everything we had, scraped together $1900.00 and headed for the Northwest.

    I will tell you a great secret. Seattle is a most wonderful place. If you've never been here,do so. It is a beautiful, gentle vibrant place with kind people and great heart. It doesn't rain here as much as people say and even when it does, its a soft rain. There are mountains, and oceans, and trails, and the history of the area is amazing. I studied the history and take great pride in pretending to know about growing up in this wonderful city. It is my home, and will always be. Denver is a great place, but Seattle lives within me.

     Moving here, we had no family or friends. Mary's family lived out at the very end of the state, so we saw them rarely. This was a mixed blessing. Without others around, we became a closer, tighter family. We did everything with our children, camped, played games, played catch every night and most importantly, grew a tightness around us that still holds us today. The small seed that Mary had started in 1979 had grown into a warm loving family that relished in our bond. My life had become a strength, a compass, that I had grown up being envious of. I am a very lucky man.

    As adults, both Chris and Heather have been blessed to meet their true companions. They are raising babies, working, and mapping out their own futures, much to my joy. But as I sit back and reflect on the path that fate has skipped us down, I know this. Mary has always been my caregiver, and me hers. We have seen youth, and passion, and anger, and aging, and of course, cancer. In the end there is a calm tranquility that tells me " Everything is fine, Mary's here".

    Bless you if you are fortunate to have found your soul mate. Not everyone does. But more importantly, let those around you know that success is not a tangible thing but a strength that can't be quelled! May your circle keep rolling around! Enjoy every day

Skip

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

    

Brain Surgery and other small matters.

  Doctor my eyes, cannot see the sky. Is this the price for having learned how not to cry?
                                                                                   Jackson Browne

    The two days after my diagnoses and before surgery were the most surrealistic days I have ever spent. My whole life I have played the wonder game." I wonder who I'll marry. I wonder what my kids will be like. I wonder how I'll die. Having ADHD is a beautiful gift and a terrible curse, you think, rethink and verify think. Having been diagnosed with what is probably the biggest 800 pound elephant in ones life is terrifying and exhilarating all at once. Every moment I felt almost high! I was alive! I looked at Mt rainier and smiled knowing that I had come as close as I ever had been to not living and yet here I stood with a cup of coffee, in my robe in the sun! In those two days I embraced the irony of finally knowing, somewhat, the answer to that ultimate "what if"! Although, the reality of the Dragon in my head was certainly lurking, the fact of breathing, looking at my grandchild, holding my wifes hand and cooking a simple dinner were divine priveleges that I was savoring.

      On  Friday we were set for surgery. I am blessed to have 2 daughters who both are in the medical profession. This is another of my great lucky breaks.My daughter, Jenae is an oncology nurse. My daughter, Heather is a benefits administrator for a major Health company. I have two goalies in my net, and that allows you to just breathe. Through another nurse Jenae had gone to school with, she found the Iron Man of Nuerosurgon's. Our first nuerosurgeon does 20 operations a year, this guy does 230.

      They walked in with Rock star swagger. Young nerdy super surgeon's on a mission! Dribbling with confidence, they assured me they would remove the dragon. Who am I not to have as much faith as a newborn christian at a tent revival? I surrendered all. Layed back and slept in the knowledge that in Seattle, these guys were the Bill Gates and Paul Allen of Brain tumors and I was waiting for their C++ magic.


      It went quick (6 or 7 hours), and with the exception of a badly placed IV needle and numerous wake ups to check shit out, I slept semi well! I woke up the next morning at 5:00 AM, watched out the window enviously at people who shuffled into work and smiled. With a big scar, a great story and a lot less dragon in my head I was still alive! 
"Whooped em again Josie! Whooped em again boy!"
                                                                       

"He's the one they call Dr. Feelgood; he's the one that makes ya feel alright." - See more at: http://www.physicianspractice.com/healthcare-careers/6-best-doctor-songs#sthash.7f8DSToy.dpuf

"He's the one they call Dr. Feelgood; he's the one that makes ya feel alright." - See more at: http://www.physicianspractice.com/healthcare-careers/6-best-doctor-songs#sthash.7f8DSToy.dpuf

"He's the one they call Dr. Feelgood; he's the one that makes ya feel alright." - See more at: http://www.physicianspractice.com/healthcare-careers/6-best-doctor-songs#sthash.7f8DSToy.dpuf

In the beginning, there was BC ... and BC was good!

     Do you ever just meet one of those people that have lived a very blessed life? If you haven't, let me introduce myself. I am Skip Long. Husband of Mary, father and grandfather. Friend to so many I can't count them and a very lucky guy. I have worked as an electrician since I was 13 and still have all my parts, and work for a quality guy I consider a great friend. My children are both married to spouses I would have hand picked if I could. Over the last 5 years, with a lot of extra work and some good coaching, Mary and I bought a nice little Condo with a view of the Issaquah Alps (you can sit on the porch and watch parasailers glide over the mountains) and were pretty much living the dream, no drama!

      Until May 19, 2014. Mary and I were hanging at the lake ( it's not really on the lake, it just sounds so much cooler than hanging at the trailer) on a Monday. We had saved a little extra and met a lady who had a "newer" trailer she wanted to sell. We were going to make her an offer at 4:00 and figured she'd probably take it , so we were cleaning and putting away stuff from the old trailer in anticipation of having it removed for our new & improved vacation shack!!! As I dried the dishes, we talked about this & that. Mondays at the lake are quiet and nice. I stepped out the door of the trailer and felt the strangest sensation. It was a Deja Vu moment! I was trying to explain to Mary, "this is so weird, I am ... " but then nothing came out and I passed out.

      When I came to, their were two large men with blue shirts with badges standing over me! " Oh Shit Skip! You done messed up now! What was I being arrested for? I have only one jail experience and trust me, it's enough to scare the pee wodden out of you, I wasn't up for this. I tried to sit up. "Mr. Long? Please lay down and relax." "What's happening?" I asked. You passed out and we are just taking you to the hospital to check you out" " Where's Mary?" I asked. She is following in the car behind us. I lay down, in a virtual cloud of fogginess.

       Emergency was a blur, the staff asked me questions, my name, the date, who was the President. Slowly all started to come back a bit and I was happy my daughters showed up. Eventually, they took me in for CT and MRI scans and decided to admit me for observation. It was later that night that a Doctor came in and told us that I had a tumor in my right temporal lobe. It was a unique type of cancer, fairly rare, not known what it's caused by, and called Glioblastoma. He suggested we go in and remove it asap! I agreed, I want no tumor homesteading in my brain! Mary and the girls went home and I slept! Having a seizure, going to the ER and finding out you have a brain tumor will wear a guy out.

       The next morning, after what tasted like an exceptional breakfast, hospital food has come a long way since I was 13, I got brave enough to visit my old friend, Mr. Bing.... Glioblastoma.... a word I'd never even heard of. " OMG Skip! Glioblastoma is , is,it's fricking Cancer! Not only is it cancer, its big ugly mess up any plans you might have cancer!" I was kind of numb. Jenae ( my Nurse daughter) came in. The beautiful part about having a nurse in the family is that they are knowledgeable and truthful. " No, it's not good, but they can get it out." I will have to trust that to them, because even though I have a great set of tools,and I am very good at cutting drywall, I will leave the cranium to the experts. Because of a delay in surgery, and Jenae knowing the best Nuro Oncologist's in Seattle, we opted for a second opinion. That girl is smart!

      We came home on Wednesday, with 2 days to wait to remove my "little friend" hanging in my brain. The only way to describe the mood was dense. Mary was sad, so sad. Heather was sad, very deeply sad. I would get a beer and sit on my porch. I watched the Parasailers. I watched people go out to dinner, get their hair cut, take their kids for music lessons. As they all went on with their everyday lives, I knew ours had changed forever.