Cycle 4 Update – Roll Tide

(This was going to be a short entry but somehow evolved into a novella.)

The MRI from my March 19, 2012, Cycle 4 appointment at UAB revealed no tumor recurrence. The cavity in my brain looks good.

Tina breathed a big sigh of relief.

I was unfazed. I mean, I was glad to hear the good news, but was not surprised at all. We then drove three hours back to Atlanta.

Upon returning home, I was immediately overcome with fatigue, collapsed into bed and slept heavily for several hours. Now this was a surprise to me because I’ve been getting plenty of sleep, including the night before. I suspect that while I consciously don’t feel any sense of anxiety or fear about the cancer manifesting as a deadly tumor, I might unconsciously carry it as an exhausting burden. Maybe hearing the good news allowed me to release a tension of which I was not aware.

In any case, I feel great now.

Why Do I Have to Take Keppra?

Alternate heading: The UAB staff is fantastic.

It’s bugged me for months. A tumor caused my seizure. The tumor was removed. Why do I need to take anti-seizure medication twice a day? I’ve asked this question to several physicians and always got a vague answer that registered in my mind as, “because we say so; once a seizure, always a risk.”

I posed the question to Richard Taylor, DNP, CRMP at UAB and he simply explained that my brain isn’t the same anymore. Simple as that. Signals travel through the brain and if they happen to be going towards the area of my brain that was compromised, things could go haywire and another seizure could happen. Maybe; maybe not. Why not take drugs that can reduce the risk of this happening? That convinced me.

Why Is My Temodar Dosage 400mg When the Formula Reveals the Range is 280 to 380 mg?

Alternate headings: The UAB staff is fantastic; Knowledge is Power

I again questioned UAB about the dosage of Temodar I am being prescribed. Dosage is generally based on the formula for Body Surface Area (BSA) multiplied by a range from 150 mg to 200 mg:

BSA (m²) = ([Height(in) x Weight(lbs)] / 3131 )½

While it’s easy to just take what the doctors prescribe, I found great comfort in the detailed explanation that DNP Taylor provided me. What the formula doesn’t account for are my closely-monitored blood counts and (lack of) toxic side-effects. Him taking ten or 15 minutes to explain this has made it so I completely understand the rationale and don’t have to wonder about it every night I down a handful of chemo.

What About Next Steps?

Alternate heading: Once Again, UAB Kicks Ass.

We constantly educate ourselves on options and possibilities. Ok, my wife, Tina, does most of that work. We asked UAB doctor Burt Nabors, M.D. specifically about Novocure Tumor Treating Fields therapy as a Plan B in case of recurrence. Our research (the company’s biased website) made it sound like the cure for GBMs. Dr. Nabors gave us his thoughtful, informed and thorough opinion about it. While it is still of interest, there just isn’t enough data for UAB to invest resources into becoming a certified provider. FDA approval just means it’s safe — not necessarily effective.

Whenever we tried to ask other oncologists about “what-if” scenarios, they all want to cross that bridge when we come to it. I know doctors are busy and don’t have time to play out all the possibilities, but all the UAB team members have been extremely accommodating to us.

Although I attended Auburn University and am not a college football fan, I’ve got to exclaim:

Roll Tide!

Alternatives — Emotional Energy

I continue to explore other sources of healing. I went to see an Emotional Energy therapist. Here’s a quick overview. Through muscle testing, the therapist revealed that I have some unresolved resentment from around age 16-17. Well, who doesn’t? That’s a crazy age. But more interestingly, she suspects that I even have some resentment from just before birth. Like maybe I wasn’t quite ready to come into the world but was plucked into existence via forceps or something. Going to have to talk with Mom about that one.

But the real interest here is that some practitioners of Eastern medicine advocate that some chronic illnesses, like a tumor, can be caused, at least in part, by emotional trauma. It sounds a little cooky to us Westerners. I have higher priorities to focus on but may consider going back for a follow-up visit.

I think Ayahuasca sounds more fun and equally worthwhile though. Anyone interested in a trip to Peru?


6 responses to “Cycle 4 Update – Roll Tide”

  1. Dennis Tarkington says :

    Thanks for the updates, Ken. I read them every one, and it helps me to understand better what your mother, my dear friend, is going through. I know you know how special she is. Keep the postings coming and I’m so pleased every indication is good!

  2. marcus says :

    Great news! Hope you’re joking about the Ayuhasca though. That stuff sounds scary to me.

    • Ken says :

      It is a little scary. But having researched it and read countless experiences, some by medical doctors, it’s incredibly intriguing. I’m not ruling it out as a possibility if things take an unexpected turn.

  3. Beth says :

    I was so glad to hear that your latest MRI was clear. This is wonderful news. I want you to know that your blog is just – simply amazing. I want to thank you for sharing your journey with us. I am awed by your strength and gracious for your insights. I’ve learned a ton from you!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: