Better Late Than Never
So it’s been a while. I apologize as it’s very diifficult to write. It’s very difficult to speak. But I’m in here. All of me. Its hard to communicate. I sign my name with an “X”. I do better with my iPad, which has been indispensable, but I have a frustration factor of 7-9 when trying to write something. I have not been writing as a result. My novel is on hold and my reality-based short stories are rare.
I will eventully write back everyone who has been so kind in contacting me. It’s just that so many have contacted me I have to do them in order. And with the writing problem…you can see where I’m going with this.
The tumor is mostly dead. As it should be. After all the trouble it’s caused. It will always be there in some funtioning way or another…hopefully in a dormant stage. The problem is the huge amount of swelling of the good tissue around it. It’s huge. Its three times a huge as the tumor itself. Which has other complications. It changes every time I go in for an MRI. Which is what good tissue is supposed to do. Is just that it has prominently compromised my speech, my typing, and my right side musuclar functions. I walk with a cane for any distances. I like to call it my walking stick. It just sounds better.
So I have three options:
-I wait. I wait until the swelling naturally goes down. This could take 3 months or 3 years.
-I opt for surgery where they take a menlonballer and scoop out the dead tumor tissue making room for the swelling to run it’s natural course while having room to breathe. There are minor risks with major impact. After all, they are operatiing on my brain.
-I try a clinical trial that has a chance of reducing the sweling is somewhat short order. Like 1-3 months. Like most clinical trials there are side affects.
I feel otherwise normal. Well, as normal as can be. I don’t get headaches, I don’t feel any pain where I need to take something. Of course I’ve got my daily pharmaceuticals in adbundance. I stopped working out which is bad. But I get my exercise by being outside and active while the weather is good.
It really is my inability to communicate. It’s been frustratiing. For Kasey, for my kids, for anyone. I don’t mix in with casual conversation, my wit is not there, and I just tend to be quiet. Which you know isn’t me. I can’t go into a store without someone to interpret for me.
But I do get compliments on my mohawk. So that’s good.
Rob
July 7th, 2011 at 7:07 am
Rob,
You are TRUE storm-trooper! KEEP PUSHING ON, and PLEASE keep that wonderful outlook that you always have! Thank you for taking the time to write this. You are such a huge inspiration, and I continue to keep you, Kasey, and the kids in my prayers & thoughts every day. SENDING HUGE HUGS, and LOTS OF LOVE & POSITIVE ENERGY to you!! xo
July 7th, 2011 at 7:53 am
Rob, you do what you think is best and know we’re behind you 110%! It was GREAT seeing you at JB and we all thought you looked great and still have your wonderful sense of humor and positive outlook! The speech difficulties are certainly understandable, I’m sure a huge frustration ‘on your end’, but from the observer, is no biggie – once that all shrinks, it’ll get easier and easier for you and then maybe we’ll need ear muffs..haha! Take care and love to you and your family!
July 7th, 2011 at 8:15 am
That must be frustrating! But great news to hear that the witch is “mostly dead”!
Can’t wait till you move past this stage of healing. I’m looking forward to reading the reality-based short stories. 😉
July 7th, 2011 at 8:45 am
Rob, I can only imagine the level of frustration that you are experiencing with communication. That being said, I thought that you did a great job at Jenny Brook with the Radio Rob show and I had absolutely no problems understanding you (with an occasional helping hand from Kasey).
The point is, the tumor is dying and hopefully, you’re not. Let’s be thankful for each day as you work your way to a time when the frustration fades away as the tumor does.
It was so good to see you, Kasey and the kids, I hope that you can make it Pemi. We’ll have a spot for you.
Love,
Steve and Bette
July 7th, 2011 at 9:14 am
We are very sorry for the frustration you are feeling, but this sure seems like mostly good news! It sounds like you have a few choices ahead of you- each one with some promise of improvement. Keep that tumor on the run! Thanks for keeping us informed, and all our love to you, Kasey and the kids. We hope you are enjoying summer as much as possible. T & S
July 7th, 2011 at 11:55 am
Oh, Rob…Yay! (I know it’s not that simple, but…YAY!!) And good to hear you are still “in there”…
Sheryl
July 7th, 2011 at 7:08 pm
I’m so glad to read this! The tumor being mostly dead is great news!
You’ll have your camping spandex out in no time 🙂
Kelly (We camped with Stewart’s at Ommegang)
July 7th, 2011 at 10:24 pm
Hiya Rob,
Soooo great to see you, Kasey, Coop & Sadie. Camping was fun…we’ll have to do more, sans the dobros (but I did develop a soft spot for them). 🙂
Thank you, as usual, for keeping your outlook positive and aimed in the direction of health and well being. (Humor comes in very handy.)
I know that you know that I know that you know that your natural state of awesomeness is constantly moving you in the direction of wellness. I don’t think there’s any action you can take from said list above that is more important than you’re knowing that your well being is inevitable. Knowing it and feeling the assuredness of it is your biggest job right now. Focus on feeling good, one feeling at a time, moment by moment. Pick your next thought and if it makes you feel good then you’re on the right track. Let your feeling good be your guide.
See only the end result of you being well (which you are) and your wit being there (which it is). Take a moment or two every day to dwell in that feeling, and everything else will fall into place.
Love love love,
Vanessa & Gino & Mitchell & Mason & Ritter xoxo
P.S. Lucky you….walking sticks are very vogue in New England.
July 8th, 2011 at 6:24 pm
Rob, so thankful for the update. Things sound mostly positive; although, I am so sorry for your language difficulties. It must be very tough not to feel like yourself.
Beth and I think of all often, and are always sending you our best thoughts. Keep fighting, and this frustrating time will have passed, and a new chapter of your life will be waiting for you.
Peace and love,
Liz and Beth
July 10th, 2011 at 5:25 pm
Dear Rob and Kasey,
Thank you for the update. You are both in our thoughts and prayers daily. Keep fighting and keep up the positive attitude even though I am sure it can become very frustrating at times. We love you and God Bless you.
Uncle Paul and Aunt Mary Ellen
July 21st, 2011 at 11:54 pm
Rob, I don’t know what path you decided to take, though know we’re behind you 100% in whatever treatment for the swelling you choose. We look forward to your posts and please know that you and your family are constantly in our minds…we miss you and hope to see all of you soon – maybe at Pemi? Just focus on one day at a time and getting better. We love you.
Kim, Scott & family
August 2nd, 2011 at 11:23 am
Just checking in buddy and hope things are positive right now.
Love to all.
August 16th, 2011 at 2:46 pm
Hi Rob, this is KUDOS, from your cousins on the Ed Swiderski side of the family wishes you and your family well! Hang in there. I know illness can be depressing at times, so I am thankful you have your family,friends and obviously a great sense of humor. Always in my prayers Cousin Elaine.