Thanksgiving....so soon?

Savannah, photoshopped in as a little Girl (betcha forgot I had this?)

            Hello my fellow travelers! I hope you are all well and swimming upstream as we are! We are in the heart of our clinical trial and planning the next trip to Duke University November 23rd 2015. We will have the usual lab work, blood draws, and dreaded MRI . The beauty is that Heather, my daughter is going down with me. I Love her voice and amazingly positive attitude. She is a harbor in a wild winter sea in my life and even if things don't go positive, she will make me smile and be thankful she is there with me.

        As I have probably told you all, Thanksgiving is my forever favorite holiday. It not is only  a great fellowship day, but as you know, we get Friday off as well. Nothing better than a 4 day Holiday! And more importantly the chance to be so thankful for our blessings we call life.

          I am so lucky to have a circle of friends, family and generally just wonderful people in my life, that I cannot describe how blessed I am. This is a terribly hard roller coaster of a life, we are constantly battling with adversity, strife, and cost's. The people around us help us, hug us, and prove that Love is so strong. We have people who support us, hold us and make us realize that life is about continuing to fight and challenge this battle! I am very blessed to have people lifting us up and supporting us as we try to battle this horrible cancer. I am truly thankful to everyone!

        When the kids still lived at home, we would always make it a tradition to ask the, "What are you thankful for?" This year, I am thankful for all those that have helped us through the year of hope. You have all been so unselfish, that it makes me overwhelmed. I feel so blessed to have people share with us to make multiple trips to Duke and pay for insurance. I don't know if this is going to work, but I know I can lay down knowing that we are truly loved, and people sacrifice for us in ways we can never repay.

    Please, understand that we are very common people. We have never had money, or a break. We are hard workers, with common jobs. we are blessed that you can help us in any small way that gives us the chance that might allow me to live another small while. Thank you mostly, for your thoughtfulness and sacrifice. As I have told you, I am a lucky man!

    Enjoy Thanksgiving! It's a great chance to tell those you Love, that you appreciate them! Hug those who are close, let your children know how special they are and give an extra hug or two, it will make you both smile. Know I will be thinking of you and smiling at the Love we all share! I love you all! Make every day count!

https://www.gofundme.com/gt46chuw

Relax..............

And Home, sings me of sweet things. My life there has it's own wing's. Fly over the mountain though I'm standing still.

                                                                                         Bonnie Raitt


  As the week winds down, I am happy to be back in my own space, with my friends and neighbors. The crisp fall air, the hot dark coffee, the  pure joy of time together is something I will never take for granted again.It's Autumn in the northwest and I am as happy as a clam!

   I have a confession to make, I have never lived alone in my adult life. It's strange because I have brothers, a sister, a wife, two children, and I've been blessed to see them and interact with them all my life. I have this past 3 weeks lived away from home for the longest time of my life. It is truly unusual! On Tuesday of this week, I awoke at 3:30 a.m. and realized I was experiencing something I have never felt. I was homesick! Excited as a child on a fishing trip, I sat outside in the humid warm air and listened to the Cicada bugs as I waited for time to go by, time slowly slipped by.

   North Carolina, is one of the most gracious places I have ever been. It is the South. A rich long history and a meandering pace, it makes you feel as welcome as a newborn. To say people are kind is an understatement. They are thoughtful and caring and very inquisitive about you (" you flew all the way down from Seattle? Does it rain there all the time?") We opted to tell them the truth, sorry Emmett Watson, no it doesn't and if they get a chance please come visit.

   We moved to Seattle in 1987 and immersed in Northwest culture. I wanted to know as much as I could about the Pacific Northwest, and quickly realized that this is a special place.People here take you at your word and will  be willing to help you up in most ways. As an elementary school child I learned of the history known as "Potlatch". The Natives of Puget Sound were fishermen, and gathers and farmers.All summer and fall,they would gather foods and wood and resources for winter and in winter they would get together and celebrate and share their bounty. This is a way to give thanks, a way to fellowship, and a way to continue the flow of love in our Family of man.

    This is a tradition that hopefully will go on forever! We have shared dinner for almost every Friday night for the last 20 some years with friends, family and even sometimes strangers. Nothing in my life is more enjoyable than laughing talking and eating with those that I care for. It's crowded, noisy and generally most wonderful as you experience and continually build the bond that ties tightly together.

    Coming to Heather's house Monday night, my heart swelled seeing and hugging and talking with everyone.My Sister, My friends, children and grandchildren. We ate pizza and shared time and smiled a lot. As I have told you , I am a blessed man, and I won't hesitate to say Thank you, I Love you, I missed your voice. Please enjoy your hours together! Forgive a lot, bend a little, and take care of each other.

Skip

www.gofundme.com
Search for Skip Long if you can. Thanks!

Metamorphis...or rebirth.... or ........hope.

488 Days ago, my world changed. In a rather mundane Monday afternoon, putting away dishes and discussing simple things, I was rocked. I had a seizure. I was confused and very lost.I didn't know , but within a few days learned that i had been dealt a blow that only changes those that have it.I was diagnosed with Stage 4 Glioblastoma Multiforme ( Which I have learned to spell since)and it is not a good thing.The doctors will not make any bones about it, it's terminal. But ... you can try to"fight it as best you can".

Fight? Fight? I'm Irish and hardheaded! I was born to fight!Fight or die? Let's go, get the gloves. And fight we have. We had a tumor removal, which was done by super amazing Dr's who told us they removed the tumor. They also explained that the tricky little brain tumor is sometimes the equivalent to removing a tree and that there are always the possibility of root structures that might come back.

Odds? Odds? I'm not a great mathematician, but I am certainly not ready to give up.With the help and support of my so strong friends, family and circle, we fought on. Chemotherapy, sickness, sleeplessness, fatigue. We did 40 days or so of radiation, got sick on meds, slept a lot. But we are battling ,literally, for life. We completed the Chemo and radiation, waited for the dreaded MRI to see if there was any growth.........Damn!

My incredibly great doctor advised we try a different Chemo and include Avastin infusions. Quell the tumor, fight! We started the infusions and a dose of Chemo meds that didn't create havoc. We battled on . All the time continuing working as i have a strong desire not to be uninsured and an insatiable desire to be part of my normal life, but we were battling.

8 weeks ago, we had the dreaded MRI, which is either Christmas or heartbreak, depending on the outcome. Everyone who is a GBM patient, or Loves one has the same reaction, you go and celebrate and enjoy positiveness, or you take half a breath and say "What now?"

Super Doctor, is pretty much out of new options. "Lets go with more Radiation, and more Avistan. Ugh, Knock knock, who's not there? Radiation and Avastin! It seemed a little like putting a band-aid on an infection that's healing, and we are asking what it does? Well we can buy you a little more "Quality Time". How much is "a little more?" 2 months, 4 Months, Maybe more.

Half Breath for everybody. Let's go home.

This didn't sit well with my Daughter, Heather. Anyone who knows anyone with Glioblastoma has known the failure of this crippler. Most everyone has watched the 60 Minutes special on the Duke University clinical trial on the Polio Vaccine. It's an unorthodox attempt to actually fight the tumor which can be eradicated. It's unusual, its makes sense, and mostly looks very promising.

Somehow, through contacting Duke, she convinced the clinical trials group to look at our records.They saw how we were still fairly functional,and asked if we could come down to be tested for a possible trial! We were excited to say the least, and with the help of some dear friends aquired a flight and a hotel for neurlogical and clinical testing in North Carolina. They tested, they prodded , they questioned and we tried to be a model candidate.We met Dr Friedman from the 60 minutes episode, and they called us back the next day, it was a no go on Polio. Apparently, the tumor is very close to an artery in my brain and they were concerned about possible bleeding out. Bummer.

They did offer another option.A very similar type of invacination that is called "DC2V" and looks every bit as promising.The D2C7 is an immunotoxin drug that attaches to the glioblastoma cells that are growing and the toxin in the drug kills the bad glioblastoma cells. The toxin does not kill the healthy tissue around the Tumor in the brain, just the bad cells. The brain swelling comes from the toxins killing the bad cells and aggravating the tissue around it and trying to heal the area where the tumor is. We combat the swelling with the steroids to help the toxins continue to work on killing the bad cells. We came home, talked about and decided its a shot!

Once again, my amazing circle is rallying to help us coordinate and work out this procedure! My son has set up a go fund me site, as the cost's continue to rise, and I thank anyone who has helped.Once again, the kindness of people is a warm blanket around our lives and once again shows how compassionate people are. I am a simple blue collar guy trying to survive nasty and tough battle.Any little bit helps, cost's are tough( cable, internet, medical bills,insurance, travel expenses,etc) and I can't say how much I appreciate all you have all done for me. Please check the link and donate if you can.


https://www.gofundme.com/skiplong

The motto at Duke is, "At Duke There is hope". I think the thing that I have been awakened to is that there is Hope.They are working to beat GBM, and I am very Hopeful that this works. 4 weeks ago, I was starting to sink into the stark darkness that gives up, that settles for "Quality Of Life". But thanks to research , hope and caring people all over the world, I have a renewed energy and hope!. Never give up Hope! Thank you all Hug each other often.We will Talk soon!

Skip

Go Duke!!

Go Duke!

Well, yesterday we received the very best news we could have hoped! The oncologist from the insurance company reviewed my Dad’s case and “emphatically agreed” with our approach to treatment! I should say a couple of thank yous to the people who worked tirelessly to make this happen and help us out! Heidi from the Welfare and Pension office, you are amazing! Thank you for taking up this cause with me from out of the blue! You remembered who I was from when my Dad was first diagnosed which was astounding, and your compassion and empathy is unbelievable! Phillis, the wonderful patient service representative at Duke who initiated the approval process. Your dedication to following up with the insurance company, and for calling me on your day off to share the great news was inspiring, thank you for celebrating with me! Craig and Jeff, thank you for your legal consultation early on Saturday, your conviction and advice helped me have the courage to tell Dad we would fight it no matter what! It is part of why he stayed for treatment, so thank you! And finally, thank you to the Oncologist who understood why we were taking this clinical trial and for approving my Dad’s treatment. I don’t know your name, but we are blessed that you agreed, so thank you!

So Dad was admitted this morning at Duke and is preparing for surgery tomorrow. After receiving the good news, Mom and Dad had time to crash a wedding and enjoy a beer at “our” little picnic table on the lawn. He is a little busy today (as to be expected) so I will fill you in on what our new treatment plan entails and maybe a couple of tips from our recent experience. I should preface this with the fact that this is what we have decided is the best option for us and my Dad at this time, all the information I provide is from what I understand, but anyone looking at this should do their own research as well!

D2C7-IT – sounds like something out of Star Wars, huh? Well it kind of feels that way too! This is a brand new Clinical Trial that Duke is conducting. D2C7 is an immunotoxin that they will inject into my Dad’s brain starting on Tuesday. The process of approval was long, I first contacted Duke on August 10th, but it was worth it. The clinical team down at Duke are downright the most hopeful, sweet, caring southerners I have ever met (I haven’t met that many, but trust me, these people are good)! Chevelle, one of the wonderful clinical trial RN’s, explained to us that D2C7 is an immunotoxin that they have been testing in rats (yep, rats!) and had shown promise in early studies of breaking down glioblastoma tumors. I am not of clinical background, so can’t go in to specifics but will include the link to the clinical description of the trial at the end of the blog. According to the clinical trial documentation the D2C7 immunotoxin has a “high binding affinity for both EGFRwt- and EGFRvIII-expressing glioblastoma multiforme (GBM) cells.” I think this basically means it is attracted the mutating cells in the B (bastard as I now refer to it) and kills the bad cells. What I understand is that a few weeks after infusion, your immune system responds to the toxin, and fights it like it would any infection. She said in early studies it kind of looked like “Pac-Man” was going in and punching holes in the tumor! I love Pac-Man!!

There are risks with this that are similar to any other treatment of brain cancer, one of the biggest being brain swelling and deficits from the swelling post initial treatment (again with the short term memory loss, headaches, all the “lovely” side effects associated with this nasty tumor.) And, a big risk knowing that this hasn’t been done on very many humans (But Dad always says, Go Big or Go Home, so why not?) Also, there are risks associated with the treatment itself… biopsy tomorrow to make sure the B is still what we think he is, the placement of up to 4 catheters in his head where our B resides. Then if all goes well, a slow infusion of the immunotoxin for 72 hours (Yes, 72 hours). A short break and CT scan at hour 24 to make sure the drug is going where it needs to then back at the infusion. And hopefully, if all goes as planned Dad will be discharged on Saturday and make the flight home to us on Monday.

If it all sounds a little crazy, don’t worry we think it is too! But we are in rally mode (Chris, I expect a rally hat picture with a Duke shirt on at some point this week!) and we are fighting! Why? Not just for more time, but also because this could help other people struggling, it could be a breakthrough and we have hope that this new experimental treatment might just knock out this dragon’s fire breathing ways. Hope.

After this week, Dad and a caregiver will need to fly back to lovely North Carolina around 9 times for MRI’s and appointments over the next 12 months. (NC is literally across the whole country from us if you didn’t know! We keep getting aghast responses with southern drawl “Oh My! Seattle, that is so far! You guys live way, way up there and came all the way down here? Well… hon, we are happy to have you!” from nearly everyone we talk to! Gotta love the southern charm!) Thankfully we have reached our out of pocket maximum and the expense of the routine clinical costs are covered by insurance. But there is additional expense in flights and lodging accommodations that we will need to resource. The Duke clinical team gave us a pamphlet of resources for flights and lodging, and they actually were able to provide us free tickets from Southwest so Mom and Dad could make this initial trip (Amazing). And, I know we will figure all this out with time, we continue to march forward!

So in effort to help others who may be suffering through and fighting their own dragon, some tips from our experience. A little bit about medical records and HIPAA… If you decide to pursue a clinical at an external facility they will likely want all medical records and history for your loved one. Your current health care facility won’t send this without having your loved one or a power of attorney sign a “Medical Records Release of Information”. Sounds official and complicated, but really it’s just a piece of paper you need to sign saying its ok to share the medical records. Call the Medical Records department, request the form, sign it and send it back via fax (so old school, but this is the current state of healthcare unfortunately) or e-mail. Depending on urgency of your situation, you can request that the medical records department Fed ex or overnight the records to your facility of choice, just be prepared with the address. This shouldn’t cost you anything (or it didn’t for us at least), and was the only way we got my Dad’s records to Duke so quickly. We asked for everything, but Duke had a very clear list of what to request, which was a great help. We completed forms and paperwork and had it back to Duke within 24 hours, which greatly advanced how quickly we were able to be seen.

Just a quick note on insurance denial, as this came as a complete shock to us this week, as the rest of his care at Duke has been covered thus far. There is a provision in the Affordable Care Act that states insurance cannot deny coverage of routine clinical care costs associated with clinical trials (Provision 2709). The clinical trial should cover any costs associated with the trial (Like the drug and materials to administer the drug). The ACA requirement went into effect January 1, 2014, but does not indicate to providers, health plans or insurance companies how to implement this within their own organizations. So, if you find yourself in a situation similar to ours where insurance was denying a clinical trial due to it being an investigational study, appeal the denial. Do not be afraid to advocate for you or your loved one. A friend gave me the advice that if I weren’t advocating for my Dad, then who would?  Insurance is a business at the end of the day, and that is how I treated it when fighting for my Dad on Friday. Be an advocate, be vocal and don’t give up when it all seems overwhelming and unreal. Then take a breath, and have faith. It doesn’t always work out, but in our case it did and we couldn’t be more blessed.

Again, these are all my own humble thoughts and opinions, I am no expert but have learned so much through this crazy battle. Oh wait…. I forgot one person to thank! Dad, you are an amazing, strong fighter. I know this battle has been hard, and at times you feel weary emotionally and physically, but we are so blessed to have you in our lives, and in our babies’ lives. You are an inspiration as a Father, Poppa, Friend and human being. Thank you for fighting! So, I sit here at the other end of the country (way up here!) thinking a few things:

1. Go Hawks (Kick off in 2 hours, I know you will be watching)

2. Go Duke Rock Stars (Kick off to surgery in less than 24 hours, (As Craig would say, Film at 11:00))

3. Fire up Big Team (We are all with you Dad, no matter how far away we are right now!)

If you are fighting a dragon (any dragon like this or something else difficult) I hope our experience helps in some way. Hug your loved ones, kiss your babies, make memories and cherish one another. I am humbled by the compassion and generosity of others, allow yourself a moment to do the same.

D2C7-IT: https://clinicaltrials.gov/ct2/show/NCT02303678

Our Fight continues

Our fight continues…

As Dad mentioned in his last post, we received some disheartening news from the Radiation Oncologist that radiation would give him more time, but not as much as we had hoped. Turns out this hitchhiking bastard is aggressive (For others that read my earlier post, I now decline to refer to the dragon as a hitchhiking friend as he has not reciprocated the favor by staying away. From now on, the Bastard it will be, apologies for offending anyone). So the dragon/bastard made his return in August. A little growth, and concern from the Rad. Oncologist that there might be more beneath the surface we just can’t seebecause of the Avastin. For us, time to get another opinion. The Rock stars are smart, but we are ready to try something new and they support us! Fire up big team!

Earlier this year I heard about the Polio virus trial at Duke, and thought maybe it was time for a hail mary (it works some time, if you will remember Seahawks vs. Packers in 2012! Go Hawks!) and given our options, (which we still have options and are to be thankful of this we have been told!) decided to contact the clinical trial team at Duke. After a whirl wind week of faxing, scanning and calling, Duke had all the medical records for Dad and told us to come on down for an evaluation to determine final eligibility for the Polio Trial! And so, we were off to North Carolina, thanks to the loving support of good friends of my Mom who arranged our flights and family who supported our hotel stay (Thank you DeeDee, Soloman, Tia and Thomas, we cannot express our gratitude through words alone)! Off to North Carolina to see about some Polio Virus and injecting it into Dad’s brain. Who would have thought? Cheers to the bastard, let’s hope for some Polio! 

So, let me tell you, the people of North Carolina are so wonderfully nice! We think we are nice here in Seattle, but those people know southern hospitality through and through. After a day of clinical testing and back to back appointments with the clinical team at Duke, they determined that we may be eligible for the Polio and if not for the Polio than a new study called D2C7. Dad passed the Neuro tests with flying colors (spell world backwards on the spot, we did it!) We had a follow up appointment the next day to determine what our options really were. So we left, tired, scared but hopeful that these smart people at Duke might be able to help us. That evening Dad and I found the only Irish Pub in North Carolina (or the only one google and I could find) and sat on a picnic bench on the lawn. We spent the evening doing what we have done for many years, enjoying a meal and talking about life, my babies, our struggles, our blessings and all that we have to be thankful for…Good, strong family and friends, the ability to work and produce great things, and our love for each other and ironically the bastard for the clarity it has provided in many ways. Life AC… Super hard, crazy but still good.

The Neuro Surgeon reviewed Dad’s MRI and the bastard had grown a little close to a ventricle, and there was concern that injecting with the Polio virus could lead to adverse outcomes(you know, brain hemorrhaging, paralysis and the like). But we still had options, radiation back home or a new clinical trial at Duke. The Duke team made the clinical decision that Polio was not the route for us, but we were still a good candidates for the newest trial (only 6 people in it so far) D2C7. At Duke there is hope! And We felt this leaving the hospital in August.

So we flew home, and spent a Sunday dinner with the family. Sitting around my kitchen island, waiting for our beef and noodles to cook, we discussed our options. Option A – Radiation for 3 weeks, risks of deficits like short term memory loss, potential for loss of physical functionality, radiating healthybrain as well as the bastard, unknown return to work status, prognosis maybe 6 months to 12 months, if we were lucky. Option B – D2C7 trial at Duke, risks of brain swelling and similar deficits because of this, and the unknown of a new immunotoxin injected into my Dad’s brain but, and this is a big BUT, Hope. This drug has proven effective breaking down Glioblastoma tumor in very early phases of the trial and follows the similar methodology of the Polio virus trial. Here is the scary truth, Dad will be the 6th or 7th person in the trial. There are risks associated with this procedure, but given our options, we decided as a family this was our best shot at more time. With a terminal diagnosis, my Dad has fought for two things. 

1. More time; time to spend with his grandbabies, time to play guitar, time to work and time to spend with his loved onesteasing and laughing. 

2. Any way to advance the treatment of this horrible cancer or to help his Glioblastoma compadres

So we made the appointments, scheduled the flights and away Mom and Dad went last Thursday back to beautiful North Carolina. Battle ready we were as long as we were cleared medically and the bastard hadn’t grown an additional tumor friend somewhere else (there are a lot of dependencies to be cleared medically for treatment). Thankfully the bastard stayed at bay, only growing a little over the last month, Dad’s blood counts looked healthy and he passed all of his neuro tests again (Dad, remember these words and say them back in order Pear, Nut, Screw! It’s a neuro/glioblastoma joke, but he did remember them!) Fast forward 24 hours when were notified that the insurance company has denied my Dad’s admittance to the hospital. And we thought our biggest concern was surviving the procedure and dealing with the outcomes of that, whatever they may be.

After spending over 8 hours yesterday talking to the insurance company, the insurance plan, the OIC and the US. Department of Labor, trying to understand the reasons for denial of this trial. The reasons I have been given are that this is an investigational study and the treatment is not medically necessary therefore insurance will not cover the hospital facility or professional fees of the treatment… We have appealed the denial (Based on the ACA provision 2709), but I am told we won’t have answers until Monday (although I have been assured an oncologist at the insurance company is now reviewing his case and we may hear back today) but Dad needs to be admitted on Sunday to begin treatment. So now… we wait and hope and pray that someone will understand our situation and approve his treatment. And even though the bastard and our opponents are mounting, we continue to fight for hope and time…….

Snow Days

Snow Days

     Growing up in Colorado, I have two "great day" memories. The first of course, is Thanksgiving. Since I can remember it's been on of my favorite holiday. Firstly, it's the great story of starving, ignorant Pilgrims who without the help of loving and kind Native Americans would have possibly perished through the winter. But together, they gathered, shared knowledge, and most importantly food.


       I, can relate. I Love hosting and eating dinner! In my opinion, this is what makes us the family of man. We get together as often as we can as a group and share laughs, friendship and food! It's a tradition I rely on and hope lasts for generations after we are gone.


    My second great day memory is ....Snow Days! When you are a kid, you don't watch the news, you just wake up in the morning, look out the window, and behold! Mother nature has caused a morning of armegeddon! The three greatest words in a winter kids day, " Littleton school district is closed!"

     I would have a great day at home, watching the snow and wind. Hoping it never stops! A bonus day to enjoy time, music and generally relaxing! What a great day to remember.

    Today we had an appointment with the Radiologist. The  reason for this meeting is a little upsetting. I had an MRI last Friday and lo and behold, my little dragon has once again made a return.This ... is a bummer. When you get the infusion you hope it's going to buy you time, long time. You hope maybe things will stay at bay for a year, a year and a half but nope. Time for a change up.

     The thing that was so unreal was the joy of watching my daughter, Heather, rally to get another edge. She and My other daughter , Jenae, decided we needed to get another option. Heather contacted the trials group at Duke university. Heather took charge and overnighted our scans and medical history to Duke. Her optimism and enthusiasm made we well up inside. She spoke with the Radiologist with ease and had my back all through the appointment. Then we went to lunch and ate fish and chips and laughed and talked in my work truck , just like we've done so many times through the years as a Father and Daughter. It made me feel so good to listen to her chat and laugh, and reminded me how blessed I am to have caring Family and friends around us.

    This GBM is whelming. It's an exhaustive , roller coaster of wins and losses. I am very tired, not just procedurally, but emotionally. Time frames like "6 months, 2 months, a year become very real and will make your mind race. But thanks to my Daughters positiveness, energy, and youthfulness, I have a little blessing and a warmer heart. It made me feel, if only for a little while, like I woke up to a day very familiar to a young boys best memories, a snow day in rainy Seattle.

      I don't know if we will qualify for the clinical, I am hoping we will. But for a few hours, I enjoyed the best feeling ever, that I have a caring and loving family. We will fight to stay together as long as we have breath.

I hope you are all well, I hope you all hug each other often and make as many memories as you can. I will try to write again soon.


Skip

Happy Anniversary, (I think)!!!

This is finally the day I wondered would come. I have lived 365 days with a terminal and a nagging friend. Thank goodness I am still here. When I first saw this meme, It made me reflect on the journey that we have traveled so far, Fighting the Dragon. If you are living with this,struggling with this , or embracing this, please take a few minutes to remember everything you've faced, all the battles you've won, and all the fears you've overcome. This is but a sampling of the gifts that GBM has revealed to me.

Terminal is not a death sentence.
The most amazing thing is finding out you have a terminal illness. The first 3 days, my kids hid my Ipad so I couldn't see what we were being dealt. I kept asking  for it, and it kept disappearing. But eventually, you find out and learn that this is a new beginning. Oh trust me, there are depressing times and lots of self pity. Sooner than later, you'll realize that the challenge is real, and your best option. I am going to die from this wicked thing, but the better I battle, the more willing I am to fight and take on the challenges, the better I feel. I want to live! To go as far and as stubbornly as I can into the final Abyss. I have seen 3 grandchildren grow and to recognize their "Poppa", and I will throw every last inch of strength I have into seeing them continue to grow. It is my personal crusade.

We are much stronger than we think we can be.
As I look back at the whirling dervish that is battling cancer, I am very proud of the strength that I continue to have. Now don't get me wrong, it's not the same for everyone, some people truly struggle. I have had my nights of sickness, my days where I could sleep for a week, and the craziness of having people literally mess with your mind. But as i have somewhat recovered from the surgery, radiation , massive amounts of drugs, and atrophy of my body, I am stronger than I thought I could be! I remember trying to walk up the hill to UWMC and having to stop 2-3 times for rest, I was exhausted. We made it. At this point I feel almost as well as I did prior to GBM. I know it can change on a dime, but I have a sense of pride in being able to get through the hard part.

The Compassion of humanity is overwhelming.
To be able to explain the kindness and gentle nurturing of us as Human Beings for each other is almost indescribable. I have been blessed to be able to feel the most overwhelming kindness as people. Friends, strangers, customers, all feel empathy and offer words of encouragement.I have friends who send me cards, text me, write me, and offer any kind of help or blessing they can. We are a good people, this I can carry to my last breath and smile, knowing that the caring kindness is very real and alive.

My Family and Friends are a core spark to my battle.
I have had very few goals that I have striven for. One, be a true companion to my Love.Two, be a great Dad. Three, be a good friend. Four, be a good worker. The payoff for pursuing these goals has been multifold. I have seen my wife become a strong, powerful, independent woman that gives me the comfort to know that, even though not happily, she can carry on with the same strength that we have counted on for years. Both my children Love me, and support me in their ways that make me so proud. They re carrying this burden,although heavy and hard, with a strength that makes me so proud I almost cry when I think of it. I cannot describe the welling in my chest when I think of them. My sister, her husband, my great friend Craig, my other brother in arms, Pat Looney. All my Vigilante brothers and sisters, all re affirm that no matter what happens, people are there for you,caring and nurturing.

Even on dark days, keep your hope alive.
One of my least favorite things about GBM, is the ever present knowledge of death. Every day you wake up and the thoughts start rolling through.People will say "we are all dying". This bring little solace to those who indeed know they are much closer than most. Worry and toiling has been a struggle for the past year and all I can say is.....relax. Yes,we were dealt a messed up hand.The best you can do is to laugh,love your people, and enjoy as much of the life you have left. Dance, hug,sing,and take chances.I might be here for a month, a year, or five years i don't know. But I know that as long as I breathe, I am going to take stock of the wonderful miracle that is life. When I go,please note that I Loved every second of my world and held on for all I can. Deep breaths helps as well.

Lets hope that next May 19th I can be able to carry on my ramblings for you! Stay blessed,stay strong,hug each other and give yourself a little break!

Your Friend,
Skip
 

Fighting the Dragon...from the other side.

A guest post from my daughter Heather to share her time and experience. I hope it is helpful, I hope it is educational, mostly I hope you understand we are not alone. We are all struggling with this baffling, crazy disease. Thank you Sis, for your Love and knowledge and strength! You Da Best!! 

“But if you can feel the sun
If you can feel the rain
Life can't be bad
If you've got food to eat
And all your dreams to dream
Life can't be bad
If you can walk away
And fight another day
Life can't be that bad” - Joan Armatrading

BC… and life AC…

Have you ever met someone who has lived a very blessed life? Well, let me introduce myself… I am Heather, daughter to Skip and Mary; wife to the most loving and supportive husband Keegan; and more than blessed mother to my sweetest little men, Brogan and Kesten. I am blessed with a warm home, a wonderful job as an Innovation business consultant in Healthcare (with a childish hope to make patients’ lives a lot better), healthy babies, and the closest family, including my in-laws (of which that title does not do justice, they are as close to me as my own blood). I am Heather, and I am just blessed.

A little about life BC (Before Cancer)… Three days before the Seahawks won the Super Bowl last year, I gave birth to my littlest guy Kesten. My Dad, known to my kiddos as Poppa flew off to New York with his best friend Craig and life was just good! The day before we were discharged from the hospital, Poppa “met” Kesten through one of technologies modern miracles Face time. It is a memory that I hold close to my heart, dialing up Poppa at 3:00 in the morning and introducing him to his newest grandson. It was amazing, warming and just lovely.

Fast forward to March and Poppa’s newest little grandson, my sweet nephew, baby Nolan Long entered into the world. (Apparently, we are building a football team) An amazing experience for all, and again our lives were just good! April came, and I turned 30 surrounded by loving family and friends, again life was just good!

On May 19^th, I got a call from Mom saying something had happened to Poppa and they were at the ER in Providence. Keegan picked me up from work and away we went. I was sure that Poppa had a stroke and I vowed on the way there that eating habits were changing on Sunday dinners and exercise was in our future! I was putting my foot down! Then, surprise… surprise… I was very wrong (you learn to admit these things easily after becoming a mom!). Turns out Dad has a hitchhiking friend taking a ride in his left temporal lobe, known as glioblastoma. I use the term “friend” loosely and really mean a hitchhiking bastard, but will try to refer to it as a friend in effort to remain optimistic.

Life AC (After Cancer)… Such a blur… That first week was filled with milestones. Get Dad out of hospital – Check… Get Dad booked at SCCA – Check…  Marathon visits at SCCA and UWMC – Check… Meet Rock stars (Dad’s neuro-oncologist team), get plan – Check, Check…

Now let me tell you one thing, these milestones were only met because we had each other. We are blessed to have Jenae, an uber smart nurse in our family, who convinced us to get Dad under the care of said Rock stars. These Rock stars removed that little hitchhiking friend and returned to us my Dad, pretty much whole (minus the tumor, thankfully).

Now, if you know anyone who has undergone brain surgery, it’s a pretty big deal, and pretty scary. The unknown of how they will wake up can be unnerving, to say the least. But 2 days later (Crazy, they let you go home 2 days after cutting open your brain!), we were home with Dad. He was pretty much the same, with the exception of a new found sweet tooth thanks to the steroids (he ate more cookies those first weeks home then I have ever seen!) and a serious craving for “Grilled Cheese Frenchies” (Google it… but don’t make them, we know from experience, they are less than tasty…).

So, we had our plan. A little break to let the scar heal, then 6 weeks of radiation and 8 months of chemo. Good. Mostly what I remember those first few weeks AC is that we had family (friends are literally family too, and should be included in this sense of the word). Strong loving support to pick us back up when we fell down, family to laugh with when all you can do is make a joke, because it is all too real and scary and sad. So, Dad, and “The Girls” (as said Rock stars refer to Jenae, Mom and myself) had a plan, and love, laughter, and support.

Life AC… crazy, scary, real and still good…

Now, I will be the first to admit, I am not nearly as eloquent as my Dad when it comes to writing, so bear with me. And I firmly believe that this is his journey, so I won’t go in to details about what we/he has experienced the past 9 months, but instead encourage you to read his older posts from the beginning. I think you will find them honest, and entertaining at the same time. When I first started thinking about guest blogging on his blog, my intentions were to share some of what I have experienced fighting the hitchhiking little bastard, I mean friend, (I am human, I slip from time to time…) in effort to shed some light into what this journey has been so that others experiencing the same fight may find comfort. And to be honest, I am hoping to find some comfort myself.

So, the last 9 months have been crazy, but Dad is a fighter. He went through radiation like a champ, and honestly, I think he used it as a new excuse to take an extra nap each day (it’s our secret Dad ;)). We had a few bumps in the road thanks to clinical trials, but overall the summer flew by and Dad was so strong. Not to say there weren’t hard days for all of us. This shit is real and real scary some days, period. We had each other and focused on our love, helping each other and supporting Dad however we could.

So, to share a couple of things I have learned for anyone who is going through this or a similar experience.

First, healthcare and insurance is seriously messed up here, just prepare yourself! I work in healthcare, and even I was surprised by the amount of red tape, bills, explanations of benefits and everything else that is just so bureaucratic and confusing about healthcare.  (this is just one of the things I hope to change during my career)

All that said, one of the first things we did (thanks to Jenae’s suggestion, she knows lots of good things) was to get an accordion folder for all the paperwork that was given to us in the beginning. We took this and a notebook to every appointment. If you have joined this bandwagon called Glioblastoma, get a notebook and a folder, just do this. The next thing I did was get a binder for all the bills and explanation of benefits that would be coming in the future. Do this, and organize bills and EOB’s by date. Then when you go to compare them, it won’t be quite as overwhelming. Read your insurance plan, and call customer service if you have a question. Understand the deductible and know what your out of pocket maximum will be.

Doing these things will give you knowledge, and knowledge is power (in my humble opinion).

But sometimes, especially when you obsessively Google GBM, knowledge is not power (turns out knowledge is fickle!) So Google GBM, and the statistics, and the support groups. But DO NOT, I repeat DO NOT, spend hours Googling. This does no one any good. But it is good to know what this disease does, how it progresses, how others are surviving, and ultimately to know what you are up against. And to find courage to fight this beast.

Then shut down your computer… and tell your dad or loved one how much they mean to you. Hug them, love them, then create and share memories.

The new normal… scanxiety and other things.

Another thing I have learned is that scanxiety is real for everyone involved. After radiation therapy, we all adjusted to the new normal, as much as we could. Dad on temodar for a week each month and scans every two months. The first scan post treatment was intense to say the least. I think we all felt it. The scanxiety creeps up slowly in the weeks leading up to and flies full force ahead as the scan date approaches.

It’s always a little funny to me, thinking about the whole group of us trudging through the hospital for scans and appointments, just Dad and his girls! The MA always has to find an extra chair during Dad’s appointments, but we girls wouldn’t have it any other way. The Rock star always begins with “and How are the girls today?” then proceeds to tell us about his latest vacation. (I think Rock star forgets all we really care about is the dang picture of Dad’s brain!) We listen and chat politely, and then finally get to look at the scan!

So the first scan came and went, clean, no progression! Great! Relief does not nearly describe the feeling after the first visit. Second scan, clean, no progression! Must be the Billy Joel Dad listens to during his MRI…(growing up as a baseball family, we know superstition is totally legit, and we have our rally caps on). Keep up the Billy Joel, Dad…

Football season is on a roll, and the Seahawks are winning. Our next scan is a few days before Christmas, and the best present yet, our little hitchhiking friend is shrinking. Awesome scan! Go, Dad, go! So we entered the New Year with new hope and new courage.

Now… here is the ugly truth about this dragon... You learn to beat him, we fight with the chemo and the radiation, but this dragon is smart. He learns too, he builds a defense and… he breathes fire once again.

(Billy Joel, you have failed us… Joan Armatrading, you are up to bat!)

Dad’s last scan in February shows some small progression (which is bad, but good because small is better than big… life AC is ironic this way). And so the battle begins again. New chemo drug Lomustine (Bonus, Dad only has to take this once every 6 weeks) and Avastin infusions every 2 weeks.

And, you expect the recurrence, (thanks to earlier mentioned obsessive Googling) but the range of emotions you experience don’t change, and still feel unexpected. In the last week I have been more mad than sad, then accepting, then mad and sad all over again. These emotions are real, brutal and beautiful. Hard, but beautiful because I can still talk to my Dad, text him song lyrics and silly pictures of my kids, watch him cook with Brogan during our Sunday dinners and see him smile when Kesten says “Poppa”. 

Beautiful… and it is for these things we begin to fight again. As Dad would say, Fire Up Big Team!