(First of all, let me say I am not telling this tale to E2 in search of any sort of pity. I think most of you folks know me well enough to know I would not do that. I am posting this here now because I realized it's selfish of me to keep this story to myself. It is quite likely that there is someone out there who will Google this term when they find out they have this malady, and they are not likely to find any good news. I would like to offer those folks some perspective and maybe even a degree of hope.)
Around 11:00 PM on the last day of November 2010 I was resting in bed reading E2 on my iPad and I had a sudden flash down my entire left side, all the way from my head to my foot. I tumbled out of bed and stood there clutching a door frame for a minute or two. I remember thinking, "So this is how it happens? This isn't so bad. It doesn't hurt." I fully expected to drop dead and I felt fully at peace with that outcome; however, it slowly dissipated and I went to find my wife who was in another room. She said it wasn't a stroke or I'd have felt it in the right side of my head and the left side of my body. It's nice to have someone in the medical profession in the house with you at this age. So we assumed it was a nerve impingement and I forgot about it. Until it happened again a few days later. Not quite so dramatically, but still; it was enough to send me to my MD. He scheduled me an appointment with a neurologist. By the time I saw this doctor, the episodes had gotten less dramatic but more frequent. He scheduled the requisite tests: MRI, EEG, CT scan.
I met with the neurologist about a week later to get the results. He said
the MRI showed a growth in my brain, thus scaring the everloving crap
out of me. I asked if it could be benign. He shook his head "no." My family doc had warned me that this guy had a bad bedside
manner, but he understated that. He set me up an appointment with a
neurosurgeon for the following Monday and left me and my wife and daughter to spend the weekend with our imaginations reeling and reading on the internet about how I was in a "really tight spot," to quote George Clooney in O Brother, Where Art Thou?
Luckily, the neurosurgeon he sent me to had a better way of handling bad news and even told me that the news might not be as bad as I'd imagined. His very words were, "Calm down. This is not going to kill you in six months."He referred to it as a "primary tumor" (meaning that it probably didn't
metastasize from my liver or lungs or some other place) and said it
was likely "non-aggressive" and "slow growing." He also said that because of the blood-brain barrier, it would probably not spread to other parts of my body. He told me there was one guy in Arkansas who knew more about this type of thing than anyone else and referred me to him. I said, "How long will it take to get in with him?" He said, "I'm calling him right now." By that, he meant he
was using his own cell phone to call this other guy's cell phone. An
hour later, I was in the office of a guy who has written books about
this subject in a brand new building in a brand new research facility
(UAMS – Univ. of AR Medical Sciences – funded primarily by the 1%er Rockerfeller family). So when folks tell you that
there's something wrong with healthcare in America, tell them I would
have to respectfully disagree. And when folks protest the 1%, it might be good to look at who funds most charities (as well as signs the front of most paychecks).
This expert told me pretty much the same thing. He said it was deep in
my brain and that even doing a biopsy might cause more damage than the
information gained would be worth. He said that taking it out would be
really tricky without some incidental consequences on my left side.
When it comes to brain tumors, it's apparently not so much a
difference in benign and malignant as it is "how fast is the
sucker growing and what kind of damage is it causing." He ended by saying, “You're still fairly young and in pretty good health otherwise,” so his suggestion was to scan it every 3 months and see what the answer to the "how fast is it growing" question was. He said that it could have been there for
years and it might be years more before it caused any real damage. Of
course, he also said the results in 3 months might change his mind.
At that point, the symptoms I was having were a recurring burning
sensation down my left leg and also in the left side of my face, along
with changes in my taste buds which made food less palatable than
usual. But I figured I could stand to miss a meal or two. (I would wind up losing over 50 lbs. during this ordeal.) He gave
me some seizure medication which he said might well calm these
So I went from thinking I was going to die real
soon to thinking I might make it another few months or even years.
On the follow-up visit with my neurologist, it turned out that my "little" brain tumor was not as slow-growing or low-grade as he first thought. This information came from (and I thought of iceowl when I learned it)
a 3.0 Tesla MRI created by a maker of some sort with new
types of contrast dye as opposed to the original 0.5 Tesla MRI that
they first tested me with. Who knew that MRI's were measured in
Tesla's? As a result of this revelation, my neurologist told me I had
to get in the hospital and get the tumor out of my head ASAP. So in just a few days, one morning at 5:00 AM, I was walking into an almost empty
hospital trying to find where to get my head blasted open. A few hours
later, I opened my eyes and looked at some guy hovering over me and
said without any hint of sarcasm "So now I'm in hell right?". In this
case hell was called a "recovery room". With a splitting headache and
the driest mouth I've ever had (I could not have any moisture due to swelling issues), I finally got transferred to ICU and
then eventually to a private room. The doc had told me that I might
expect some consequences from this little intrusion that might not all
be pleasant. For instance I had noticed even before the operation I
was drooling from the left side of my mouth sometimes, dropping things
out of my left hand without realizing it; I damn sure couldn't play
the guitar anymore, if I ever could. My left foot was bumping into
things unexpectedly. And I'm sure some of you with whom I chat
regularly had noticed that I was making uncharacteristic spelling and
typing errors. Which brings the question to mind: "Well why didn't you
go get the second MRI sooner if you knew it was getting worse?"
Answer: "Because sometimes shit is going on you just don't want to
know about." After surgery, the “consequences” my surgeon mentioned were much more drastic than I could have imagined. I had no idea where my left hand or left foot was. I was transferred to an inpatient rehab hospital for a month. It was a wonderful place and the people were all quite optimistic that I would get some function back in my leg and arm.. Walking would be easier because it seems that the leg stuff comes back sooner. The
stuff with the left hand was going to take a while. And, of course,
there were the follow-up appointments which will involve the word
"oncology" and that's a word you really don't want to hear. But they
said I was doing better than most and from what I saw around me it
appeared to be true and not just happy talk.
I could add 3000 words here about the month I spent in the hospital, being wheeled around whenever I needed to get out of bed, but let me just summarize by saying that every professional nurse I had was an angel of mercy. I could never have expected such concern or going "over and above the call of duty" which was shown to me by these ladies. If you know a nurse, give them a hug and a "thank you" from me.
While confined to the hospital bed,
I started thinking that it would be amusing to have the first
sentence in an obit say, "Danny, after a halfassed skirmish with
cancer, gave up and said "to hell with it" on such-and-such a date."
But I knew that would be mean and cruel and that so many folks would
be offended. On the other hand, offending folks has never really been
a problem for me. I suppose I think folks take everything way too
seriously and could use a jab in the eye every so often to remind them
that they're not nearly as important as they imagine themselves to be.
Exactly 9 months since I first had that seizure which started the whole chain of events my neurosurgeon showed me a very disappointing but not too surprising MRI.. The tumor that he took out on May 17, 2011, was stage 4 glioblastoma the size of a large chicken egg, and even though I didn't want to research it a whole lot, I could tell by that number and that name that it was not likely to lead to anything good. He had told my wife that the tumor had the consistency of a "woody substance" and that he was fairly happy about getting a "clean cut on the margins." The margins being where you want to get all the cancer "seeds" but not ruin good brain tissue. Everyone involved told me, “This is the kind that returns.”
So it was indeed growing back and in a spot where the surgeon said, "It'd just
ruin you if I tried to remove it." I wasn't going to let him try, anyway. Those weeks in the hospital and hours in rehab trying to learn to walk and use my left arm and hand again along with 30 trips to radiation had
already convinced me that I was done fighting this and was just ready
to let happen whatever happened.
At that time, I could walk without a cane (even though I really should have been using one). I could type with my right hand. I was able to take care of myself, drive, etc. so my wife was able to go back to work and return to her life outside of being my primary caregiver. It really dawned on me how serious an illness I had when I got approved for SSDI in three months. This pays me as much as they would have had I been 65. We had just moved into the new house we had built and it was lovely. Of course, my wife had to do all the moving work, but we had more friends than I even knew we had pitch in and help her.
My care was transferred to a little 80 lb. Chinese neuro-oncologist, a woman after my own heart, as well as on the track of my brain tumor(s). After another MRI which was ordered by her it turned out that her treatment
suggestions of Avastin infusions every three weeks and oral chemo pills, Xeloda, had not only slowed the tumor
growth, but may have actually shrunk it a bit. Before talking to her, I had fully expected to be dead within a year. I now think I had based that assumption
on a question I asked my surgeon when he told me there was nothing
else he could do surgically. I think I said, " How long will I live if
I do nothing"; thinking I would likely forego drastic radiation and
chemo treatmeants, thinking of "quality of life" and chances of
success. He said, "Six months. Maybe a year." It turned out the tiny Chinese lady had a more positive opinion.
She said, "Oh, this is a terminal illness, no doubt. But we can
sustain your quality of life for longer than you think. You rive rong time."
The good thing for me is that these IV drips of Avastin once every 3
weeks and 2 weeks on/one week off Xeloda do not seem to have any
effect on me, as they do some folks. I literally cannot tell when I'm on the stuff and when I'm not. The idea behind the chemo is that it slows down or prevents blood supply to your fastest-growing cells; cancerous being the fastest-growing ones of all. It's important that you keep an eye on your white blood cell count so that you don't open yourself up to opportunistic things like pneumonia and so far mine have been fine. So we'll keep doing this routine and have
new MRI's every 6 weeks and see what happens. I know that there will come a day when an MRI shows the tumor has finally outsmarted the drugs, but I am working out at the gym or at home almost every day to learn to walk without looking like an extra from The Walking Dead and try to use my left arm and hand again (less likely), and here is my suggestion to anyone who wants to give up and lay down and wait for death: You're better than that. That goes especially for those of you who could make changes in your lives which would help you live longer. Just fucking do it. Quit making excuses and think of folks with illnesses where no change would matter. Think of what they'd give to know their efforts would actually lengthen their lives.
Or don't. It's your call.
So is this going to kill me?
When is it going to kill me?
Not today, sir. Not today.
A pretty good article on why cancer is a verb and not a noun: here.