Blackened

The long and short of it

My tumor has increased in size significantly. We hope to meet with our team of neuro professionals as soon as possible to discuss implications and options.

Prologue

If I had written this post earlier in the day, it would have read very differently. I was in a blackened state. Not at all the beacon of optimism and hope, you’ve come to know and love. The version below should read more colorfully.

Chapter 1 — Battling Cancer

On June 1, 2012, we launched a second surgical attack on the GBM in my brain. Although my surgeon dealt it a decimating blow, the nefarious tumor cleverly attached itself to my Sylvian Fissure, preventing total gross resection. So to finish it off, I decided that the second-wave offensive would be the NovoTTF-100A device. After all, why bring out the big guns, like Avastin, and suffer it’s chemo casualties, when I can be on the FDA-approved progressive edge of fighting cancer?

Chapter 2 — Progress Check

Today is August 14th, 2012. Tomorrow is the one year anniversary of my first craniotomy. I’m thirty-three days into using the NovoTTF-100A device. Tina and I walk from our hotel to my appointment, enjoying the beautiful Chicago morning. I’m confident and haven’t the slightest anxiety.

First up — 8am MRI. The Northwestern radiology staff are wonderful. The facility was quite nice. It almost felt like a spa visit (at least to me – I can’t speak for Tina).

We then headed upstairs, eager to hear the doctor’s positive review of the MRI, so we could go explore The Magnificent Mile before returning to Atlanta.

Chapter 3 — The Big Reveal

We arrived at the outpatient cancer center and spotted our two Novocure reps. They were there to download the performance data collected by the TTF device I had been using. We all exchanged hugs and niceties while doing the compulsory doctor-visit wait and recording of weight, blood pressure, et cetera.

After a short wait in the exam room, the nurse practitioner came in and bluntly informed Tina and I that the tumor had grown dramatically — almost four times last month’s recorded size. She wanted to get a sense of what we wanted to do now (that is, continue with failed battle plan or try Avastin or a trial).

I was pissed off. Not so much because of the bad news. Moreso about how it was delivered to us. Why wasn’t a doctor talking to us about this sensitive information? I felt so bad for poor Tina. News, good or bad, takes a while to sink into my thick skull. But Tina “gets it” immediately. She was visibly shaken by this horribly disappointing and unexpected report.

I settled down and the doctor soon came to see us, giving us all the time we wanted to grill him with questions and concerns. He was great actually and I see now that the NP was also doing her best to help us. We thanked them graciously and parted well.

Chapter 4 — Let’s Be Honest

In our meeting, the doctor revealed that he didn’t have the highest of expectations for the device. He seemed keen on Avastin and trials. But Novocure is an interesting product. (I know because I get asked about it by strangers every day.) They’ve got some good results data. They’ve got no debilitating side effects. These two criteria have garnered quite the hype. It sure sold me.

Tonight, a good friend picked us up from the airport and took me to dinner where he revealed that all along he thought the thing looked like an experiment and, as much as he wanted it to work, just never thought it was going to. I don’t begrudge him that. It seemed to be the same opinion the doctor had.

I am not saying that I think the device is not effective. Of course every person’s situation and results are unique. I may very well continue to use it. But I know I have to do more.

Chapter 5 — Regroup, Strategize and Continue the Fight

I’m trying to rally the Emory troops ASAP. We knew this was a potential outcome so we’ve already discussed back up plans. We know it’s time to be aggressive. Could there be a third craniotomy? Possibly. If the surgeon says it’s reasonable, I will be strongly compelled to go that route. My previous brain surgeries seemed to go pretty well in my eyes. Afterall, I can still function and even take the bike for a spin every once in a while. But it wouldn’t end there. We’d have to get started with another treatment soon thereafter — maybe take another stab at Temodar; or maybe it’s time to bite the Avastin bullet. Another clinical trial is a strong option, but I won’t do another double-blind, randomized, placebo-controlled study. I don’t mind helping advance science and all, but I’m selfishly more concerned with me right now.

Chapter 6 — But, What If…

Tina and I will have to consider other (crazier) scenarios. Maybe this is a good time to take that trip to Africa we’ve dreamt about for over a decade. Maybe we’ll see if Tommy Chong needs more crusaders on the cancer battlefront. At the very least, get into an ocean before the season is over. Also, other countries have options not available to us here in the U.S.

Chapter 7 — The Very Thought

While I’m being open and honest, the Africa trip idea, is clearly a romanticized answer to the classic “What would you do if?” hypothetical. Medically, it means “doing nothing.” What happens if I have a seizure out on the savanna? Are there adequate medical resources? Spiritually, maybe it’s just the ticket. I’d still have my friend’s prayers working for me.

Maybe it’s just my time. I’m not afraid. Many things in life are scary. High-speed weaving through Atlanta traffic on a motorcycle, for instance. Or scraping pegs on The Tail of the Dragon with an oncoming logging truck taking up half your lane. Or having to buddy breathe on a slow ascent and safety stop before surfacing because of equipment malfunction. I’m sure you’ve got your own close-call, adrenaline-inducing experience to relate to. I’m saying, maybe dying is just the final scary-exciting experience of life. I’m neither eager nor prepared for it. But it’s not going to intimidate me into sacrificing enjoyment and fulfillment while I can still pursue them.

Who Knows? (That’s not another chapter — just my final thought.)

TSA agent giving my gear a wipe-down. They even gave Tina a No-Alarm pat-down. (It may have been for associating with a suspicious guy with strange head gear).

Tina and I having a raw, vegan lunch at Karyn’s Cooked in Chicago. The food was really tasty. Strangely both of us felt slightly off afterwards. Maybe from soy overload.

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11 responses to “Blackened”

  1. Rob Marbury says :

    Your transparency is inspiring, Ken. Prayer does make a difference. I’m praying for a remission, as well as that you keep your peace of mind…it’s a beautiful thing in the face of the World’s fears. If you’ll indulge me, Philippians 4:6 is a great verse in regards to keeping that peace (that surpasses all understanding). I hope it helps…We think about you and Tina A LOT at “the Group.” Let us know if there is anything else we can do for you. We eagerly wait for good news!

  2. Christie Dobbins Matte says :

    I am sure there really are no words to describe what you and Tina are going through at this moment, but the ones you just wrote for us are as eloquent, honest and inspiring as I have ever read. Thinking of you two every day. You inspire us all.

  3. Teresa Jackson says :

    Ken, I can only imagine what you and your wife are going through. I love the fight I see in you. You are such an inspiration! You are definitely in my thoughts and prayers.

  4. Jen says :

    Hi Ken – I’m speechless, other than I’m praying for a miracle. A real, honest-to-goodness, amazing, inexplicable MIRACLE.

    • Ken says :

      I like that, Jen. I can see how an explicable miracle would be nice for peace of mind and to help other people possibly. But a miracle that can’t be explained whatsoever sounds more interesting.

  5. Carolyn "Carol" Weddington says :

    Ken, I was so hoping for a good report and am dismayed to read that the GBM monster is growing. I know that God works in mysterious ways, and that one must have backup plans for life’s detours—if one door closes, another one opens. Dylan Thomas wrote, “Do not go gentle into that good night… Rage, rage against the dying of the light.” Adding my own verse, “Many have heard and pray for your plight. You must attack this beast with all your might. Do not lie down and give up the fight, not when other plans are in your sight. You, alone, know for you what is right. May your vision be clearer in the morning light.”

  6. Dennis Keeney says :

    Hey, Ken! Africa, huh?? DO IT! You both deserve to check that off that Bucket List. As always you truly are an inspiration to all that know you. Do what you have to do to feel the best you can along this path. Africa…very cool…want pictures for sure.

  7. Kitty says :

    I don’t know what it must be like to be told my life was hanging in the balance. I do know what it’s like to have the literal HELL scared out of me when learning I had MS at age 23, three months after marriage. I know all about the courage it takes to live as normal as possible while slowly losing use of my legs and right arm and not knowing what tomorrow may bring.

    I know I’m comparing apples to oranges here, but there’s a message. I don’t know how you’ve acquired your unwavering strength and courage. I only know I didn’t have that until Dr. Bernie Siegel and a chance meeting with a young recovering hard core drug addict taught me the power of spiritual faith and the need to get my house in order. Although I had abundant chores to attend to, the hard work has been well worth it.

    I can now say without hesitation, I am prepared to face any challenge without question or fear I stress the word ANY because if my number came up in the next ten minutes, my slate is clean. I can only suggest to you: cleanse your pallet, you can never know what or when or how much to liking the next course will be served.

    • Ken says :

      I’m very familiar with the role that cannabinoids COULD play in my fighting and overcoming cancer. I’m going to give allopathic medicine one more chance. If it doesn’t work out, I could very well consider this route. In fact, It would be cheaper and safer for me to use hemp oil as a first attempt. It’s a shame we’re not all free to try a natural remedy. Are people really worried pot will gateway me into using heroin and meth? Geez.

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