MRI Update 12/18/12

Skip down to Straight Talk if you’d rather just hear the meat of the matter. If you’ve got nothing better to do, I recount, below, the day’s excitement in pretentious detail because it makes me smile.

The Trip

After my MRI yesterday morning here in Atlanta, Tina and I flew to Durham, NC (for an appointment at Duke the next day). We played — pretending we were getting away for a romantic vacation. We flew for free due to the generosity of Southwest airlines, but we had to go to Orlando, FL first. (I know — it doesn’t make any sense (traveling 950 miles to go someplace 350 miles away) but those are the facts.)

Once in Durham, we ate wonderful tapas at a hole-in-the-wall Italian/French/Spanish/Peruvian cafe (Meelo’s Restaurant). We declined dessert because we avoid sugar now. José poured us a complimentary Limoncello. The illusion of an exotic vacation was working. Then, we bedded down in the Quality Inn.

In the morning, we breakfasted with the other guests of our all-inclusive accommodations. I loosened my dietary reins and ate a waffle doused in syrup. I didn’t give the ingredients a second thought. That was a damn good waffle.

Then the hotel fire alarm blared for a minute. Hotel staff scurried about, clearly not expecting a fire drill. But none of the twenty or so guests seemed to even notice it. I got up and looked around. If a fire alarm is a-blaring, seems like a good idea to take heed. Finally, I overheard a manager tell someone it was a false alarm. Yet, no announcement was made to the dining crowd. It all seems a bit David Lynch to me. That ended Vacation.

After clinic check-in, blood draw, clean-catch urine sample and a very long wait, we were finally seen by my neuro-oncologist. I think Katy is a fantastic doctor and wonderful person. She delivered the news with an alarming directness.

There has been considerable and concerning tumor growth and a lot of bleeding.

“What do we do?” I ask.

Get control or succumb.

This news froze me. Katy faced me closely, looking hard into my eyes. My silence worried her. Usually I would be bombarding her with many suggestions for and questions about my treatment. But she snapped me out of the stillness and we talked. She was surprised that I had not been symptomatic, that is, had a seizure. It’s time for a new plan and there’s no time to waste.

Tina was wrecked — in no condition to drive us to the airport. I was my usual calm, collected self. I switched my focus to not having a seizure while driving to the airport really fast (and safe).

To get back home on these free Southwest medical passes, we were going to have to fly from Durham, NC to Nashville, TN to Houston, TX and finally on to Atlanta. That’s insane and wouldn’t put us home until almost midnight and it was only 2:00 pm. So we dashed over to an AirTran gate that was about to depart for a direct flight to Atlanta. The wonderful gate agent, Therese, defied the captain and held the plane for us. We paid full fare but sometimes getting home is priceless. Our good friends, B & D, retrieved us from the airport with only a moment’s notice. Tina called AirTran to discuss the airport situation and commend the great service. They comped us tickets for our next flight.

We attracted a lot of good fortune today despite the bad news. I sit here writing and recounting the day without a worry. Odds may be against me but it just doesn’t feel like my time. I hope Tina is having pleasant dreams. It’s so difficult being the caregiver. (Or at least, “being MY caregiver?” I’m quite difficult.)

Straight Talk

MRIs are done about every two months. The tumor grew about 2 cm since my previous MRI. Before that it had shrunk about 25 percent. Chemo is effective. But the cancer seems to adapt to treatment. There are other chemo options available. Most likely I will trade in Avastin and Irinotecan for Temodar and Vorinostat. The side-effects of these drugs will be every bit as unpleasant as that of my previous regimen. But they are taken orally rather than by IV infusion. That’s a good thing.

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10 responses to “MRI Update 12/18/12”

  1. Guy ENGELS says :

    ken you got still the NWBO option left ?

  2. Halstead says :

    Keep up the fight, Kebo.

    Elting visited this past weekend, and he filled me in on all that I missed at Kebostock. Wish I could have made it.

    Sending some positive vibes out to you, Halstead

  3. AdAbsurdum3 says :

    I hate to hear this news but am so happy you’ve been asymptomatic and are still strong! I know your doctors will design a good treatment plan for you, and I hope you continue to stay a few steps ahead of the cancer. Keep your spirits up and show it who’s boss!

  4. Andie Young Mewbourn says :

    Ken, while this news isn’t what I expected to hear, I know you will face whatever comes with a spirited positive heart. Sending you and Tina lots of healing prayers and love. You know where to come if you need some beach time…always have room for you.

  5. Kitty Mosley says :

    It’s time for me to tout about something outstanding about Newnan – especially on the cusp of my almost complete decision to move back to Atl. Newnan is the new home of the southeast division of the Cancer Treatment Centers of America. There are only four others like it in the country. They specialize in advanced. acute cancers. According to your specific cancer, they fly specialists in from all over the world. You and Tina can stay out of the air and take your exotic vacation 45 mi. down I 85 Check it out. http://www.cancercenter.com/southeastern-hospital.cfm

  6. Anonymous says :

    Kebo – Luv-e-bug here. My family continues to love you and pray for you! You are a good man and from all accounts lucky to have a bride such as Tina. We’ll keep praying for your healing. You keep fighting.

  7. Dennis says :

    Ken there is not a day that goes by you are not in my thoughts. Hold on to your Spirit and it will get you through this walk!

  8. Anonymous says :

    Our thoughts are with you and Tina…

  9. julia says :

    Stumbled upon your blog…prayers being said from Australia for your healing. And for your wife that she is strengthened and comforted in this gbm journey with you.

  10. Tina Johnson says :

    It was so great seeing you & Tina last week..she takes such amazing care of you…i am so grateful & blessed to be a healing part of your lives…stay strong & keep up the fight..blessings to you:))

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