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
Wednesday, September 30, 2015
Sunday, September 20, 2015
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.
Saturday, September 19, 2015
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…….
Thursday, August 13, 2015
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
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
Wednesday, May 20, 2015
Happy Anniversary, (I think)!!!
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
Thursday, March 5, 2015
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
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 19th, 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!
Wednesday, December 31, 2014
Happy New Year
Should auld acquaintance be forgot,
and never brought to mind?
Should auld acquaintance be forgot,
and auld lang syne*?
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!!!
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