But I Feel Fine

RH 19 interviews Eric Safire 3
Post transplant, thanks to Ezer Mizion

Utter shock. That’s what I felt sitting there in the doctor’s office. It was a busy time for me. I’m a lawyer and I was in the middle of trying a complex murder case. But it was time for my annual physical and, feeling virtuous and responsible, I took time off to have it done even though I had zero symptoms. Then the doctor asked me to sit down. Something in his serious tone of voice told me I would not be getting back to my murder case too quickly. Continue reading But I Feel Fine

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When Numbers Become People

numbers
Cancer patients: Not a number but real people!

Everyone knows that the number of cancer patients has skyrocketed. Studies give us numbers but it’s hard to empathize with a number. So let’s meet some of the people behind the numbers. Like J.G.. He’s young with two kids, aged 5 and 7. He works as a massage therapist and personal trainer. But for a long period, he wasn’t able to work at all. Actually that’s not true. He was working very hard to remain positive during his stint with chemo. “It was tough,” he says. “The hardest part was being away from my kids. They were living their lives and I couldn’t share it. I just ached for that hug around the knees when I would open the door. I thought that after chemo, I’d be done but the doctors told me I needed a bone marrow transplant. They were not too encouraging as I had an unusual chromosome and they felt it would be difficult to find me a genetic match. So here i was, a father of 2 small kids and being told that I probably will not be here to watch them grow up. Well, let me tell you, Ezer Mizion found me not one match but 4. I try to give back to others now but it can never be enough to pay back Ezer Mizion for what they did for me.”

RH 19 interviews - Rita Soyka
Formerly a cancer patient. Now doing just fine!

R.S. is a middle-aged, upbeat lady with a bouncy personality. “Who, me?” she thought to herself when her doctor sent her to a hematologist. She had come in for a routine physical and her blood count was a bit high. Her daughter-in-law, who is a physician, later said she never would have sent a patient to a hematologist for such a low count but Rita is eternally grateful that her doctor was the cautious type.

Things began to heat up at this point with test after test and each doctor looking more serious. It was lymphoma. Rita was devastated. “My heart was pounding as each test was done. I calmed down when the team presented a plan for me. It made me feel secure and they assured me that things looked good. Facing the unknown was so hard.  I made a conscious decision not to fall apart. I tried to think only about what I had to do, not get emotional over the future. I would tell anyone newly diagnosed- Stay focused, Take it one day at a time. Be proactive and check out a/t that looks questionable. If you live in a small town, don’t be satisfied with the medical care available. Seek out the best even if you have to relocate temporarily. And, above all, don’t give up.”

RH 19 interviews - Steve Pomerantz - art only
Positive, cheery, upbeat–that’s me, these days. The cancer is history.

S.P. was diagnosed in 1998 and given 10-15 years to live. He had three kids ranging from two to nine. Even the oldest was not told what is going on. They just knew that their father wasn’t feeling well sometimes.   “Boy, was that an understatement. The side effects of the meds were horrendous, including depression and suicide tendencies. I found out later that most people on these meds take disability but I’m the type that doesn’t give up so I kept on working.  This treatment wasn’t given until many years later, in 2014. By this time, I was newly remarried and my kids were adults, not getting along very well with their stepmother. There I was, lying there helpless and having to listen to the people I loved most argue with each other regarding my medical decisions.  Not fun. But things are great now. I had my transplant.  I’m much stronger and my family has gelled.  We’re all on the same page.

I used to be very involved in sports. Those days are gone for now but I have a new hobby. I’ve discovered painting. I find creating watercolor designs to be very satisfying. And the results are quite good if I do say so myself.”

Three real people. Three real people who were floating through life until they reached a bump in the road. They could be your neighbors. Or your cousin’s neighbors. Stay tuned till next week when we will meet with more.

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It Was A Good Day

pr bmr - donor in India
Volunteer couriers carrying tubes of life to Israel for testing

What is a good day? Many people would say that a good day is when everything you planned works. No hitches. No slip-ups. And what does one do when there are hitches? Get frustrated, of course. Rant and rave. Find someone to blame. Typical, right? Very human.

But when someone’s life is at stake, we can’t afford to be human. Shouting will get us nowhere. So we become creative instead. Continue reading It Was A Good Day

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L’chaim! To Life

hourglass
A cancer patient cannot wait!

He was eight years old. Third grade is a time for small boys to learn multiplication tables in the classroom and how to pitch a ball in the schoolyard. But Naftali* had learned neither of these. Instead he learned about IV’s and scary hospital equipment, about hair falling out and about roommates who ‘disappeared’ never to return. Naftali had cancer. The medical staff called his parents in for a meeting. There was only one recourse left: a bone marrow transplant. It would save his life but a genetic match would have to be found soon or… it may be too late. Jews will genetically match other Jews and so Ezer Mizion was contacted. Ezer Mizion’s registry with close to a million potential donors is the largest Jewish registry in the world, but, for Naftali, it was not large enough. There was no match. Continue reading L’chaim! To Life

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What Was It Like?

puzzle piece- menchie
DNA matching is essential to a successful stem cell transplant

She’s back. Our data processer is back in her usual seat, glued to her computer as usual. Entering the data of recent donations to Ezer Mizion’s Bone Marrow Registry. Doing her part to help save lives around the globe.  As if everything were normal. As if she had not just now come back from Israel. As if she herself had not just donated her stem cells to save the life of a middle-aged woman with AML.

But there’s a difference. There’s a glow on her face. While her co-workers continue their varied tasks to benefit the Registry, she, a young girl, had experienced something that most people can only dream of. She had saved a life.

We’ll let her tell you her story. Continue reading What Was It Like?

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Too Minor to Mention

pain
Even severe pain would not prevent her from helping to save a life

Four years ago she had registered with Ezer Mizion’s Bone Marrow Registry, never expecting to actually be contacted. The call came as a complete surprise. It was the registry informing her that she was a possible genetic match for a young child. She could save his life!  She was glad she was home to receive the call. Normally, she would be at work and wouldn’t have received the message until evening, perhaps even a couple of days later when she would get around to checking her messages. But today she was home and she told the caller to send someone right over.

Further testing had to be done and, for that, blood would have to be drawn. “Let’s get started right away,” she said. “I don’t want that child and his parents to suffer a minute more than they have to.” The Registry staff was grateful that she didn’t ask to procrastinate and made arrangements for the blood to be drawn that very day so that testing can begin.

The phlebotomist continues the story. Continue reading Too Minor to Mention

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Let’s Keep on Trying

pr Imri 2019 drive
Are you of East Turkey, Azerbaijan, Iraq, Armenia, or Georgian descent? Please read on.

At his bris (circumcision), they named him Imri. He was blessed that his parents merit bringing him to the chupah (wedding canopy), a simple, often –taken-for-granted blessing.  At the time, it seemed simple. Now they are not so sure. In fact, they are not certain that his mother will enjoy the deep satisfaction of bringing her little boy even to first grade. You see, two-year-old Imri was diagnosed at two months with DBA, a rare disease which does not allow him to manufacture blood cells. He has no clotting system or immune system. When his mother brought him to the ER, the nurse immediately snatched him away and rushed him to the trauma unit. His hemoglobin was 2.5, the level of someone who has passed away.  In addition, he has recently developed  MDS,  a rare blood disease for children which often develops into leukemia. The unfathomable has become all too real for this family. Imri Chai may not live past toddlerhood. Continue reading Let’s Keep on Trying

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From A Busy Day at the Computer To…

puzzle w menchies
A DNA match: the puzzle piece that will mean life itself!

She was sitting in front of the computer at the Ezer Mizion office. Very busy as usual. All around her were co-workers engaged in varied aspects of raising funds to facilitate bone marrow transplants. At times she even heard snatches of a co-worker’s conversation with a donor who had merited to save the life of a young mother or perhaps that of a tiny toddler. Saving lives was the order of the day. Behind the standard office banter was the seriousness of what we accomplish. She felt good. She knew that her work was important, one cog in the wheel of making sure that a cancer patient in need of a transplant received his chance to live. It was gratifying work. She couldn’t ask for more satisfaction in a job.

Until one day when an enormous bundle of satisfaction landed right in her lap. She had been too busy to pick up a call on her cell and so the caller left a message on her voice mail. Hours later she checked it. “What’s this??? It must be a mistake.” But it wasn’t a mistake. She was being called by the Ezer Mizion office in Israel, not on the office phone but on her cell phone, not for the usual request of a report on something-or-other or the phone number of somebody-or-other but for her personally. Why? Because she, a girl who processes data, line after line, so that a life-saving transplant can take place, she herself may be able to save a life. She was found to be a possible match for a 65 year old woman with AML.

The office erupted in excitement. One of us is a match! Further testing had to be done. It meant a blood draw. Our phlebotomist was called in and he also joined in the office elation. Each tube was carefully wrapped and shipped to Israel where the final testing would be done. Now we waited. Each day began with, “Have you heard anything? Any update?”  And one day there was. Positive. She was a perfect genetic match. Like the people whose statistics are listed on the brochures she sends out. Like the people she has seen on the organization’s videos. She, she herself, would be traveling to Israel. She would be spending hours at Ezer Mizion’s new Harvesting Center with staff members seeing to her every need so that she can be perfectly comfortable. She would be the heroine of the day. She would save a life.

 

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In Memory of Meir

Image result for needle image
A genetic match will save a life!

Needles? Tubes? Oh, no! Not me! Yedidya has been frightened of anything sharper than a safety pin since childhood. But then he met Meir and began to realize that childish fears were just that – childish. They were overshadowed by more important things. Things like saving someone’s life.

pr bmr in Mem of Meir
Yedidya makes a difficult choice

Yedidya and Meir had met when they were children. His family spent three years in New York and their friendship flourished. So much so that, when Yedidya moved back to Israel, they remained in contact until they reached young adulthood. It was then that Yedidya received the news. Meir had leukemia and it didn’t look good. Within months, it was all over.   Yedidya was devastated. Can such a thing be? Such a young person no longer alive?? Continue reading In Memory of Meir

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