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Multiple myeloma isn’t a ‘rare’ blood cancer for me. Here’s how I live with it

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With Pakistani prime minister Zulfiqar Ali Bhutto at his home in Sindh, Pakistan, 1972.

A retired journalist and former Associated Press bureau chief in Pakistan, Bangladesh, and Afghanistan among other countries, shares how he lives with a disease that is now in remission. Statistically, he has five years to live. He hopes to celebrate his 92nd birthday in January

By Arnold Zeitlin

Last month, Congressman Stephen Scalise, an American politician from Louisiana who serves as the House Majority Leader, announced that he was diagnosed with multiple myeloma.

The Republican, 57, said he will continue to serve in the House, describing the cancer as “very treatable”.

Reporting on Scalise’s condition, The New York Times described his illness as “a rare blood cancer”. For me, like for Scalise, it isn’t so rare. We have it. And it is indeed treatable.

I wanted to pen my experience and share my journey so that it might serve as a hopeful message for those who have the same or similar condition or might someday experience it.

Arnold Zeitlin: “I feel fine”

I was diagnosed with stage four multiple myeloma in 2016. A kidney specialist I consulted found high levels of protein in my blood test, and he referred me to a cancer specialist, who started a program of chemotherapy (pills) and brief radium therapy. From then onwards, I had monthly consultations with my specialist.

About a year later, my protein levels returned to normal.

However, at that time, statistically, I had five years to live. I was able to drive despite neuropathy, which numbed my feet.

I’ve been in remission for the past three years with five more years to live, statistically, with the hope to reach my 92nd year in January.

Don Baylor, the major league baseball outfielder and manager, died in 2017 at age 68, after surviving multiple myeloma for 14 years. Some people survive 20 or more years with it.

Life goes on

The other day, my nurse practitioner casually asked if I was still ‘working’. It was her delicate way of wondering if I was going crazy in old age.

I keep myself busy with various activities, including writing a monthly book review for the South Asia Journal for readers interested in the region. This is a quarterly publication with an online edition, published by Ghulam M. Suhrawardi, a Dhaka-born author, educationist and consultant who lives in New Jersey.

The public library in Centreville, Virginia, where I live, sends books to the homes of disabled or elderly folks who find it difficult to visit the library. I keep them busy sending books to me.

With Philippine First Lady Corazon Aquino during the martial law days of her husband’s rule

Every month, I receive a three-hour immunisation infusion of a cocktail of drugs I cannot pronounce. One drug is listed at $21,000. Health insurance has allowed me to escape these hefty bills. I have a Medicare health insurance plan, the U.S. government health insurance scheme for those over 65. Additionally, I have a supplementary health insurance policy as part of my Associated Press retirement package.
I stopped driving three years ago and have graduated from a cane to a walker since then to keep moving.

A cancer specialist sees me twice a year now to monitor my condition.

All said and done, life is good. I feel fine.

Arnold Zeitlin was bureau chief of The Associated Press in Pakistan, 1969-1972. He has served as AP bureau chief in West Africa, Bangladesh, Afghanistan and the Philippines. Since retiring from AP in 1987, he has held senior positions in various organisations dedicated to media freedom. He has lectured and taught at Yale, Boston and Northeastern universities, besides the Guangdong University of Foreign Studies, China. This piece is adapted with permission from an email he sent to friends recently. His articles are compiled at http://azeitlin.wordpress.com. He can be reached at [email protected].

The artcile was published in Sapan News.

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