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!
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