"This Thing In My Head"--or, The Trials of an Aphasic Writer

Hi everyone,

We've been meaning to come back and post, but Bob has been hard at work on the new book instead.  He just finished it this week.  The title so far is "Deja Noir".  (The first three pages of it are posted here  for those who want a sneak peek.)  This has been a major milestone for Bob, since he has been determined to finish this book ever since the cancer diagnosis. 

 We are cleaning up the last two chapters now and then the book is off to Bob's agent.  Hopefully after that we can resurrect this sadly neglected blog.

On other fronts, Bob has author appearances coming up in May and August, and an MRI scheduled for March 6th.   Keep your fingers crossed for a good result!

In the meantime, please come by Bob's Facebook page and tell him hi.  He checks it every day and loves to hear from people.

Thanks for stopping by.

--Bob and Linda

(posted by Linda)

Still trying to get back to our story here, but in the meantime, great Bob health news!  Bob's MRI this week was FANTASTIC!!! Thing One and Thing Two are yet smaller. He has been invited to join a Phase I clinical trial for a new tumor vaccine. The doctors at NIH want to do two more rounds of Temodar and stop. We haven't seen his oncologist at VCU yet, so will see what he has to say. Big decisions ahead...on other fronts, NO MORE DEX! Woo-hoo!!!

Tags: clinical trials, glioblastoma, good news, health, mri, tumor vaccine

Hi, y'all.

Bob is getting some new likes and friends on Facebook, and he wanted to share with them the first few pages of his new novel, Deja Noir.   He started this book before the brain tumor diagnosis and picked it up in the middle after his surgery and is on the final chapter now.  We think this book is something of a miracle!

Click here for a FREE read:

First three pages of Deja Noir

Tags: deja noir, free read

(posted by Linda)

...You’ll be shocked.  The other patient assistance program never called me back. 

But by this time I was determined.  An exhaustive online search lead me to two documents prepared for the federal government which state that Temodar is, for sure, a Part B drug.  And, when taken right before chemo for the purpose of preventing nausea, Zofran is supposed to be a Part B drug, too.  I’ve got links to the documents in our GBM online support group.  Anyone who needs them, please let us know.

On to actually trying to get the plans.  Ha.  I am about to apply online, when I actually get to the legalese part and read the fine print.  Apparently there is a six month waiting period for “preexisting conditions”, which I nearly have a heart attack when I find.  I call our friendly ehealthmedicare insurance broker in a panic.  She insists everything will be covered.  I tell her she better check, because any time language like that is in an insurance contract, do you really think an insurance company won’t use it to let itself off the...

Tags: gbm, health insurance, medicare

(posted by Linda)

Hi.  It's been a long hiatus here on The Trials of an Aphasic Writer.  The reason is, it was summer, and I was working my ass off.  Now that things have slowed down a little, Bob and I hope to post more often, and to redesign the website, too.

I'm skipping ahead in our story today because the information I have to present may be of vital importance to some.  If you or your GBM patient is about to turn 65, read this entry and save yourself a PILE of trouble!

In fact, in case you just want the information and prefer to skip the details about how we (finally! ) got it, I'm just going to post the straight guide, without the torture, directly below:

IF YOU OR YOUR GBM PATIENT IS TURNING 65, an Original Medicare plan with Medigap F should cover 100% of all the expenses you will need.

I was months finding this out!  For you, it took one second.  Rah!  On to the actual post...

In August of 2011 my husband was diagnosed with glioblastoma multiforme—the dreaded GBM.  Because he was a candidate for a couple...

Tags: finances, health insurance, medicare

(posted by Linda)

The next morning the alarm goes off at six and I grit my teeth and drag myself out of bed.  If I hurry, if I really hurry, I should be able to hit the ICU at seven, while I can reasonably expect Dr. Alexander to still be there on rounds.  I don't have to work today and really feel like I need more sleep, but morning rounds is my only chance to catch my husband's surgeon.

Dr. Alexander tells me Bob is doing well and he plans to extubate later today.  "What time?" I ask, knowing Bob will be looking for me the second he wakes up.  "About three," is the answer.

I'm worried about how agitated Bob seemed yesterday and I don't want him upset, plus I do not realize how light his plane of anesthesia actually is.  (Bob tells you himself in the previous entry.)  I have a dozen errands I could run between now and three PM, and I believe I will do more good there than here.

I head for the hospital cafeteria for breakfast, then I go to the Cullather Brain Tumor Quality of Life Center and pick up financial...

Tags: aphasia, bob wakes up, brain surgery, gbm, glioblastoma, icu

(posted by Bob)

Everyone forgets something—a name, an address, maybe your glasses—you feel silly.  When you’re an author speaking at a library and you can’t read the opening paragraph of your own mystery novel, you really hate that one.   

For me it took only ten days for a life of language to be gone.  Lucky for me, like most “writers”, I had a day job:  I worked on an armored car.  Turned out I couldn’t read there, either.    Linda, my wife, hauled me off to her doctor—I didn’t have one—and the doctor sent me to the emergency department.    I had cancer.

In that part of my brain where I read and write, a mass had grown to the size of a golf ball.   It was called a glioblastoma multiforme.   The CT scan and MRI showed a round, white circle with a large, black, necrotic center.  Grim faces all around....

Tags: brain surgery, glioblastoma, icu, sedation

(posted by Linda)

We were telling Bob's GBM story here, and we stopped in November.  The reason, to be truthful, is that Bob was doing pretty badly, and he didn't want to post any news about his condition on his website.  Well, now he's doing much better, and I want to continue the story.  One reason is that Bob has some fascinating things to post about it, and another is that, if any other family of someone with GBM stops by here, I was hoping to give them some real-world idea of what they'll experience as their friend or family member goes through surgery, chemo, and radiation.  I had a wonderful reference book to consult, don't get me wrong, but all the stuff you will read from medical people constitutes the Sanitized Version.  When you are about to sign a consent form for radiation, for example, and you read the dry laundry list of side effects:  "short term memory loss, weakness, possible loss of the ability to read and/or write..." you just can't picture how those things are going to show up in your daily life, and all the nuances of having to cope with them.

So here is...

Tags: brain surgery, glioblastoma, icu, sedation

(Posted by Linda)

Don'tcha just love good news?  We've got two bits here:

First, and best, Bob did great up at NIH this week.  Thing Two is smaller in size and they are very happy with how he is doing.

Second, there is a NEW Art Hardin short story out!  (Actually it is not so short...it's 37 pages, but they're all good pages.)  We are working on trying to get it as a free download, but Amazon and Barnes and Noble aren't allowing that right now, so for now it's .99 cents on your Nook or Kindle.  If you have never read an Art Hardin mystery, now is a great time to try one for (almost) free.

Happy St. Patty's Day everyone...

Tags: art hardin, glioblastoma, nih, short story, the small matter of ten large

Tags: glioblastoma, richmond times-dispatch, writing