Sunday, September 21, 2008

Into Each Life Some Rain Must Thump

Monday, August 25, 2008, 2:22 p.m. ET: E-mail to Lee Ann: “My vision is Wacky…”

Exactly 14 months and one day after my brain first exploded, the fun appears to have started again.

Just two days after returning home from a fabulous sailing trip to Martha’s Vineyard to celebrate Lee Ann’s birthday, the lug nuts started coming loose again.

In the middle of a conversation at work, the vision in my left eye suddenly went haywire. Although the symptoms were similar to what I experienced on June 24, 2007, I remained alert. Scared, but alert. I immediately made a bee-line for my office.

After sending the above E-mail to Lee Ann, and a similar one to someone else in the office to let them know what was happening, I turned my attention to the phone. It was a bit tricky dialing the phone with only one good eye, but I was able to first call Lee Ann and then reach my neuro-oncologist.

As luck would have it, I had one tablet of anti-seizure medication in my backpack, having forgotten to remove it following our vacation. He advised me to take it immediately and then wait a bit to see what happened. He said that a trip to the emergency room was probably not necessary as long as I was otherwise unscathed as the net result of that would probably just be laying around for several hours, being told to up my dose of anti-seizure meds and sent home with another nice bill for Anthem.

Over the course of the next hour or so, the symptoms began to fade although it was very difficult to focus, read or type.

While receiving a ride home, I had a sudden onset of the symptoms again, this time accompanied by strong feelings of déjà vu as I watched cars pass us and drive through intersections. Too bad I could not see the winning lottery numbers for Wednesday’s Power Ball drawing. Lee Ann met me at home and we went to Dale’s first JV football game. Under the bright sun with the symptoms fading fast, I found it almost impossible to follow the action on the field. It seemed to take forever to spot our son and as soon as I would lock in on him, a play would start and I couldn’t follow anything.

A call to the neurologist on call at the hospital did not help to ease any anxiety as his advice was, “You can come in if you’re worried.” I decided that the third episode would be the charm if a trip to the ER was in order. Thankfully, the symptoms faded and the only lingering effect was a nice throbbing headache on the right side of my brain that lit up every time I coughed, sneezed or did anything that sent blood rushing to the right side of my brain.

For the sake of brevity (sort of), I’ll fast forward through the next couple of weeks…
  • August 28: MRI at IU followed by an appointment with Dr. Edward Dropcho, neuro-oncologist; enough concern about change from prior to MRI to order PET scan; he mentions something about the colon cancer chemotherapy treatment Avastin showing promise with brain tumors although not FDA-approved for such use.
  • September 3: PET scan at Wishard Hospital and then hop on an airplane to get down to Atlanta to be there for the start of the SPJ convention on September 4.
  • September 4 – 7: Waiting, waiting, waiting for results…The SPJ convention keeps my mind on other things most of the time. With a deliberate positive outlook, I place the winning bid on a week-long vacation scheduled for next July 4-11.
  • September 7: Another “episode” affecting my left eye, symptoms pass, but brain-ache returns as before.
  • September 8 - 10: Still waiting on results from PET scan with anxiety rising.What should have taken only 24 hours ended up taking several days because Wishard Hospital, a separate entity from IU Hospital, failed to communicate some important information. Apparently, the PET scan printer was down, the IT guy was on vacation and no one bothered to let my doctor know…
  • September 10:FINALLY…I hear from my Indy doctor. Unfortunately, the results are inconclusive. As I understand it, PET scans are very effective if there is definite cancer activity (super hot) or no cancer activity (super cold). Never one to make things easy for anyone, least of all myself, I fell somewhere in the middle. My brain had changed, but the reasons why were not clear. And so off went the scans to my neurosurgeon, Scott Shapiro, and to Howard Fine at the NIH.
  • Later that evening: Lee Ann and I take Dale and Jace to their first concert: Journey, Heart and Cheap Trick at Verizon Wireless Amphitheater. Due to the haze caused by pot-crazed concert-goers, we hope no random drug testing is announced at school the following day.
  • September 11 – 16: Even more waiting, this time for a call from the NIH. Several calls from my direction result in conflicting stories about who has what and when I should expect a return call. Anxiety still on the rise. I’d rather have devastating news over no news.
  • September 16: my local doctor’s recommendation is to order further scans, including spectroscropy, and consider a biopsy or surgery although readily stating invasive techniques in the absence of something definitive on which to operate is less than ideal.
  • September 17 at approximately 5 p.m.: “Please hold for Dr. Fine…” Having been told to expect a call from his nurse practitioner, I immediately girded my loins. He talked fast. I tried to scribble notes that I could decipher later. He didn’t beat around the bush. “This looks like tumor progression…Not massive, but enough to give us concern…Too much time has passed since radiation ended for this to be radiation necrosis…The Temodar is no longer working and we need to do something else… Don’t recommend surgery…Too close to your visual pathways…Permanent loss of vision possible… Clinical trial utilizing Avastin and some other novel agent code named MLN518…Life threatening side effects always possible…You need to consider all of your options and make the best decision for you…Consent forms will be sent so you can read up before your next visit…Whatever you decide, we will always be involved in your care…We’ll see you next Friday…“-click-”
Now my brain was really hurting…As I looked down at my piece of paper, I realized that had stopped taking notes after the first few sentences so I began furiously trying to remember the chronology of the conversation and commit it to writing.

Lee Ann was out of cell phone range so I had a few minutes to put things in order and visit the NIH Web site to get the most basic details of the clinical trial Fine had mentioned before she picked up my message and called back. A good friend of mine happened to ring me up in the interim which allowed to say everything out loud once before the other line lit up and knew it was my wife calling.

Lee Ann already had other plans that evening, but decided to blow it off and we took the kids out to dinner and explained everything we knew up to that point.

A (not so) good night’s sleep did help a bit and I was able to speak with Fine’s nurse practitioner for a good half hour on Thursday and get a better understanding of the clinical trial and discuss the schedule for my upcoming visit on September 25 and 26.

Since this single post has already grown to the length of a freshman composition theme, I will leave you with my my current considerations, in no particular order...
  • Start Avastin here, now (and hope insurance will cover it)
  • Surgery first (if that even makes sense), followed by Avastin
  • Try to get in Fine's clinical trial using Avastin and MLN518 (have yet to know the risks)
  • Look elsewhere (Duke, MD Anderson, UCSF, etc.)
  • Chanting monks to scare away the tumor
That’s right. I said it. Chanting monks. Google it!

"Be still, sad heart, and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall..."
-from The Rainy Day by Henry Wadsworth Longfellow

33 comments:

Julie said...

Since you're sharing quotes, I'll share one with you now.

Because of the LORD’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I say to myself, “The LORD is my portion; therefore I will wait for him.”
~ Lamentations 3:22-24

Praying for you and your family (as always).
Julie

Strude86 said...

While I have no control over the work and actions of chanting monks, I can lend ordinary mainline Protestants to the task, if that'll help.

Be well.

David McDonald

flynn151 said...

Along with Br. Poof, I will add my voice to the gathering of monks. Following my journey to the edge, I tried to return (with severe modifications) to what I thought was "normal" as if nothing had occurred. Friends who had been through similar situations had not mentioned the possibility of relapse or recurrence. Getting medical help at the earliest possible moment probably saved me again, with additional bonuses for my general health.
More critical was the prayer support of family and friends. Know that many prayers are being raised for you among us, and that the Lord hears our petitions and watches ove you. His peace and comfort will guide you through the coming days, weeks, and years.
"For the Lamb will be their shepherd; He will lead them to springs of living water. And God will wipe away every tear from their eyes."

Flynn

Jill said...

I did Google the monks. Wow. Who knew? I learned something from you, once again.

You, Lee Ann, Dale and Jace are in my prayers. Travel safely and tell that Dr. Fine to get to work.

Jill

Donna from Memphis said...

I have no quotes to share and if I waited to write something eloquent and memorable, this comment might never be posted. So, let's see how do I say this....ummmm....OMG, THIS TOTALLY SUCKS!!!....well, ya know I warned you it wasn't going to be eloquent. Terry, I send you love, my heartfelt get better wishes and my belief in miracles. Hang in there - Your courage and perseverance is admirable - you are an inspiration to your friends and family. With love, light and prayers....Donna

Guenveur in Kent said...

I think when an agnostic prays, it counts, so I'm giving it a shot. I believe attitude works, too, and you have plenty of that, favorite nephew.

Russ said...

Terry,

I'm pulling for you. When you posted that your doctor's last name is "Fine," I thought that you were goofing.

"Paging Doctor Howard, Doctor Fine, Doctor Howard!"

Mike Burrell said...

I don't know what to say, but I didn't want to finish reading what you had to say without saying something.

I decided to flip a coin, heads for serious and tails for comedic. It was tails, so here you go:

Three old men were sitting on a park bench comparing notes on the problems of growing old. The first said he couldn't remember the last time he had a good bowel movement. The second one said his problem was more with his bladder and prostate. The third old man laughed and said he must be the lucky one.

"Every morning at seven I pee, and then at eight I have a good dump," he told them. " I just wish I could wake up before nine."

SallyB said...

Cousin Terry.....wow, I hope all goes well. Chant, yes, it does have healing effects. The mind is far stronger than the body. It can do amazing things. Between positive attitude and deep meditation visualizing the tumor gone, well....I am sure that such techniques will vastly help. That's not to say ignore modern western medicine, but it could add a complementary aspect to your treatment that could certainly help.

You've got some tough choices ahead, cuz, and even though I am never quite sure whether I believe in the whole "God" concept as most religions tend to conceive it, if there is a higher power to whom to "pray", then count me in as sending much good healing energy your way and hope for a good outcome to whatever higher power exists, if there is such a thing. So, consider this an agnostic's prayer for her beloved cousin.

Keep us posted, won't you?

Love, your cousin from Ohio,
Sally

Strib said...

Hi Terry!! Thank you for keeping me in the loop. I am honored to be included in the "inner circle." There is nothing clever for me to say about your situation. One thing I discovered in a very real way when Josh and I went through all of our crap with addiction is that I am powerless over certain things. For one thing, I can't control whether Josh decides to pick up a drink one of these days. I hope he doesn't, but I can't control whether or not he does. As a human being, I have a finite amount of power...I have limits to what I can control. In order for me to experience peace, I lean on my higher power. For some people, the higher power is Jesus Christ...for some it is rising up to a higher self...for some it is chanting monks...it doesn't matter which one it is...find it...seek emotional and spiritual growth...evolve. Be good to yourself. (You are a great writer, by the way.) Love, Julie

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