Dex in Wonderland

Me, reflecting as usual

Monday morning I awoke at 3 am. I dressed, brewed a cup of tea, and left the house. A full moon lit the way, casting long shadows across the path to my truck. Out east, the horizon bristled with silhouettes of fir trees.

I drove to my youngest son’s house. Isaac and his wife also live in the Upper Hood River Valley. We enjoy having them close by. In the winter, he works as a cinematographer for Nimbus Independent. Their crew would be spending the next three weeks in Japan creating ski videos. I’d volunteered to get him to the airport for his early morning flight.

We wound our way along the deserted roads through the outskirts of the city and onto the 84 heading west to Portland. I’ve written before about the perils of the Columbia River Gorge Highway. Monday, though, conditions were benign: no snow, ice, or traffic.

Winter in downtown Hood River

We chatted quietly, enthralled with the unusual light. Mostly, we praised the beauty of the Gorge Scenic Area, which at this time of the morning, under a full moon, cloaked our mood with its magic. The cliffs to our left loomed like the ramparts for a fantasy kingdom. To our right, the river laid flat, a canvas upon which the moon painted its desire. I put the cruise on 70 and we sailed through a wonderland of light and shadow.

We arrived at the departure gate by 5 am. I double-parked. Hurriedly, we unloaded his ski bag and camera equipment, shared a hug and said our goodbyes. I left him with the fatherly admonition to be safe. Then, I drove away, looking forward to the long beautiful drive home.

Later, I would have to work a full day. I wasn’t worried about being too tired following the early awakening. Monday is steroids day. The current treatment for my cancer, multiple myeloma, consists of 10mg of revlimid, three weeks on, one week off, along with the steroid dexamethasone, 20mg once a week.

My cat Spanky chasing his tail.

I’ve adjusted well to the revlimid. The side effects do not trouble me. For its $10,000 monthly cost, however, you’d think it would not only cure the cancer, but make me a better golfer, writer, and lover. Alas, it has barely slowed down the progression of the myeloma, while providing no other benefits. Accordingly, upon the recommendation of Dr. M, three months ago I agreed to add a steroid to the mix.

Dex side effects, of course, are another story. MMers universally hate what the dex does to them. Fortunately, the low dose I take has a small, if annoying, window to its downside. On days one and two, I am perky. My mind whirls but doesn’t focus well. I bustle about the workplace, happily stoned with nervous energy that accomplishes little, equivalent to a cat chasing its tail.

By days three and four, though, clouds begin to roll in on all this sunshine. The artificial energy transforms into authentic fatigue. I just want to lie down and close my eyes. And, at work I’ve been known to nod off during a lull in business. Sometimes, my mood takes an impatient turn. I must be careful not to snap at people, especially customers.

It's time for something big

By day five, things are back to normal or, at least the new normal that patients with cancer learn to accept. I can handle these side effects as long as there is a corresponding improvement to my condition. Thus far, the results seem positive. Just today, I learned that the M-spike, the best measure of myeloma’s status, dropped for the second straight month. Furthermore, I underwent an X-ray screening of my pelvis and the long bones in my arms and legs. Myeloma often causes lesions in the bones that lead to painful fractures. As of January 2012, I do not show evidence of bone involvement. That is a promising prognostic factor for any myeloma patient.

I also heard from Isaac this morning. He sent a brief email saying he’d landed safely in Sapporo, Japan and that he was going straight to bed.

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7 responses to “Dex in Wonderland

  1. Awww those early morning airport runs. I find I can actually enjoy them. The quiet of the day where few are up and out. I LOVE Spanky. What beautiful colors!

    Dave had to stop the Dex. He too took it on Mondays and his co-workers finally asked what was up with Dave on Mondays? I responded with a big smile “Oh… that’s Dex Day!” Which of course garnered more questions until the light bulbs went off with big smiles. He just got such horrible edema from it, probably from being on it off and on for over 18 months. But most of the studies are pointing to it exponentially helping the other drugs. So if you can tolerate it, it’s probably a good addition to the mix.

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  2. John,

    Well at least our unusually mild winter is working in your favor. And, I surmise/suppose, that at this point in the game, whatever stop-gap advantage you can gain through use of the most advanced medicine available to you, must be most appreciated. We can only wish it were more, and accept.

    Isaac’s adventure/work sounds exciting. The aftermath of Mother Earth’s recent fury should be an interesting observation. May it be both fruitful and enjoyable for him and his party.

    You’re looking good, there in your reflection.

    Take care – what-feels-like-my – old friend,

    Matt

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  3. I haven’t been on here for a while…but checked in tonight. I enjoyed reading through your last several entries…and as usual, benefited from the positive energy you always exude in your writings. I’m glad you can handle the treatment of Rev & Dex and continue with your normal activities.

    I hope you realize how much encouragement, hope, peace, and pure positiveness you give to others. You leave me wanting to be a better person.

    I’m glad I came across you in the blog world. Take care.

    Cindy

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  4. John,

    I appreciate your efforts and find your blog very interesting.

    Details: Age 72, diagnosed with Stage 1-2 MM 5 mos. ago. Been on Rev (25 mg daily; 3 wks on, 1 wk off) + Dex (40 mg once weekly, every week) for 4 mos. Also iv infusion of Zometa, a bis-phosphonate, for bone strengthening (once monthly, every month). Symptoms similar but not identical to yours. Major effects from Dex: Day 1, minor hiccups and cough; Day 2: hiccups, cough, flushed face, fatigue; Day 3, symptoms disappear, energy returns. No major side effects from Rev or Zometa. So far no bone marrow transplant, but doctor brought up the idea of such at last appointment. No decisions made yet.

    New medical news: “New Insight into Drug Action in Multiple Myeloma,” Medscape Medical News, 2011-12-12. Mayo Clinic researchers (Keith Stewart, MD, et al.) found protein receptor responsible for Rev activity called cereblon. Apparently necessary to produce cereblon in order to respond to Revlimid. Annual sales of thalidomide and lenalidomide are $3 Bil. Presented at Amer. Soc. Hematol. 53rd Annu. Meeting.

    Many thanks for what you’re doing! Keep it up!

    – Henry

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  5. Pingback: A Busy Summer | Good Blood, Bad Blood·

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