Eve of Destruction
On this brain tumor eve…one year ago, December 3rd, I had a moment of sheer terror before I woke 3 days later in the ICU. I had been intubated and stuck with so many probes and IVs they had to build an Erector set around me to keep in all in. What…who…where….
I’ve been extremely lucky to have my dear wife looking out for me and being my caretaker. She’s a miracle worker. She is awesome. Enough said.
Now is a much simpler lifestyle compared to where we’ve ever been. We have a small rented house in Southern Maine. We have one economy mini-SUV. Our belongings have shrunken by 2/3. If only I had known about this simpler existence we may have done it earlier. But we needed a nuclear implosion as a catalyst. I have a brain tumor.
Treatment has been advanced. With proton therapy, Temodar, and Avastin things seem to be going well. My proton therapy went as planned. As soon as I finished that I got a heap-load of life-threatening necrosis. The Avastin took that away miraculously. I have no new cancer, and the Avastin is working. Unfortunately Avastin does not work forever. There will be a time when the Avastin stops working as I then work on clinical trials or whatever comes my way. Avastin carries extreme side effects. Like dropping dead from hemorrhaging or blot clots making their way to the lungs. There are many more but I save you the gory details. I am aware of one thing. Avastin is keeping me on the steady trail. Regardless of the side effects. Let’s hope that none of them surfaces.
We wish to thank all of you for your support and good wishes. I want to point out a couple (who wishes to be an anonymous) for their helping us. We were able to get out of the house we owned…and that was a huge (and I mean HUGE) relief. You know who you are. We were complete strangers, aside from the acquaintance relationship my parents had with them. Take pride in helping out making an impossible situation possible. We would have had a foreclosure for sure if it wasn’t for you!
As many of you know I am retired. I lack the speech, balance, and social life I once had. My cycling days of getting around are over. I wrecked my bike, almost slid under a tractor, and was out of it. An ambulance rushed to the scene and what was my transportation is over. That would have been a hoot. Here I am fighting the worst sorta heath issue and I get run over by an oil truck.
So now I got my eye of these mobility scooters. That will give me the transportation I need without tipping over. It’s got 3 wheels! I need transportation or I may just go insane. I’m sitting around the house way more than I should.
I’m clearly not the writer I was. It takes me a lot of time to even type this message. One of the many results of having brain cancer.
So that’s the update. Life will be in 2 month stretches. I’ll not know a prognosis because there isn’t one to be had. I’m stable at the moment and that is good. And I am thankful for that.
This is Rob. Brain cancer patient. What a long strange trip it’s been.
(I know that I have plenty of emails to return. It’s just hard working on the PC now.)
December 2nd, 2011 at 2:08 pm
Much love, hugs, happy thoughts and prayers always with you.
God Bless, Peace, and FULL HEARTS through these holidays.
Love to you all.
xoxoxo
December 2nd, 2011 at 2:09 pm
Scooters are highly under rated. Keep on trucking…..
(You are a lucky man, in many ways – your family chief among them)
December 2nd, 2011 at 2:10 pm
Rob,
Glad to hear you’re still positive and optimistic. I love that you’re looking for a three wheeled scooter! There’s a retiree in Unity tooling around on a “pimped out” candy red street-legal scooter that was converted to a trike – kind of like a mini Gold Wing motorcycle with three wheels. I caught the old guy doing burnouts with it in the local cemetery. Too funny.
I’d love to stop in and say hi if I could. I have a number of weekdays off this month prior to Christmas if you’re up for a visit. Shoot me an email with your street address if you’re up for it. 🙂
December 2nd, 2011 at 2:23 pm
Hi Rob and Kasey! So good to hear about how life is going for you guys. I’m sure I’m not alone in saying that we think about you all often, and miss you guys very much. Southern Maine is very lucky to have you! The Scarolas wish your family a very happy holiday…
Colleen
December 2nd, 2011 at 2:34 pm
Thanks for keeping us up to date my long distance friend. You have not lost your wit, that’s for sure. You have been in our thoughts, and we wondered how you were getting along. We are currently boatless (yay), but I am still building the next one. What I have completed is hanging from the ceiling today because I have to make room for the obligatory holiday party tomorrow. You would like the theme: The ’70’s. We will raise a glass to you and your family- and then boogie oogie oogie in your honor! You’re an inspiration, love to you, Kasey and the kids. thanks for the updates. Todd and Susan.
December 2nd, 2011 at 2:50 pm
Rob, It’s amazing what you and your wonderful family have gone through. You are all fighters and embracing what life has thrown your way with a smile on your face. Way to go!!! You may be retired but I can personally tell everyone that you are the best webdesigner around. Jenny Brook Bluegrass wouldn’t look so good without you behind the scenes!!!
December 2nd, 2011 at 3:17 pm
Good to hear from you Rob. You are in our hearts and prayers. God Bless your family.
December 2nd, 2011 at 4:09 pm
Rob,
Good to hear from you-quite an anniversary you are marking today!You have been an inspiration to us all and we have tried to learn to slow down and enjoy the simple things-Happy Holiday wishes to you and Kasey and the kids!
December 2nd, 2011 at 4:48 pm
Hi there Rob!
Soooo great to hear from you! You, Kasey, Coop & Sadie Lady are always in our thoughts. It’s nice to hear that you’re adjusting well to your new, slower lifestyle. You are amazing. A-ma-zing. And Kasey, dear one, you are too. Love is a wonderful drug. And it seems like you guys have a lot of it.
The other day, Ritter started talking about playing “500” with Coop. He remembers that camping trip (or at least that “cool game”) like it was yesterday. We’re so lucky to have those memories with you–what’s a little mud and lightning among friends?!
Thanks for writing. Take yourself off the hook of responding to one-to-one emails and enjoy your kids instead!
Tons of light, love and smiles comin’ at ‘cha!
xoxo
Vanessa & Gino & Mitchell, Mason & Ritter
December 3rd, 2011 at 12:16 pm
Nice to hear from you Rob! Thanks for the update. We all sure miss you guys and think and talk about you all the time.
All our love to you, Kasey, Coop and Sadie!
December 3rd, 2011 at 1:39 pm
We are so happy for this update…I have been thinking about time, and I am so happy that Rob is doing so well. Beth and I wish you the most blessed holiday season, and a beautiful 2012.
Peace and Love to all of you,
Liz and Beth
December 5th, 2011 at 3:14 pm
Hi Rob! Thanks for the update. I can’t believe it has been a year. What a long strange trip indeed. Your strength and humor amaze and inspire me. I think about you guys a lot- love to everyone.
December 5th, 2011 at 4:07 pm
Rob,
I don’t know how you do it…but you keep making me LAUGH! I am always so glad to hear how you [all] are doing…and I miss you and Kasey. I appreciate that you remind me how important the day-to-day things are…it certainly is easy to get caught up in all the other churn.
Love,
Sheryl
December 19th, 2011 at 8:53 am
Rob & Kasey, it’s good to hear that things are still going well. As you know, you take each day one at a time and enjoy it to the fullest!! As for the scooter, I can say nothing but good things about them! We had one for my mother with her cancer last year and it was wonderful. One of those types you see on TV with the 4 wheels. The grandsons both loved it and I think put just as many miles on it as my mom. =) And they are often covered by medicare (though we recieved ours from a family friend).
It’s amazing what can happen with a strong “kick butt” attitude, which both of you have, and the love and support of family and friends.
I think of you all often and wish all the best for you guys!
Jill
January 3rd, 2012 at 9:16 pm
hello rob, & kasey,
it has been a while since i wrote, but i have taken the liberty of purchasing your greyfox 2012 full festival tickets (2) , as you were unabled to use the tickets from 2011. i thought of just sending you the money, that i am sure that you could use, but if i did you would not go to the festival. please accept them , & use them. i will be only to happy to drive you, & your family. i’ll also drive you back, & forth to doctor appointments as needed.
much love
mark mcelroy
aka toyotamark
March 15th, 2012 at 2:34 pm
pastile marirea potentei…
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