How fragile we are, how fragile…

Angioimmunoblastic T-Cell Lymphoma

Suddenly, the chorus of some Sting song popped into my head.
On and on the rain will fall
Like tears from a star
Like tears from a star
On and on the rain will say
How fragile we are
How fragile we are

That’s it! That is how I’m feeling. The song references a different context, but it still applies.

ITEM: My father in law Richard has Angioimmunoblastic T-Cell Lymphoma. It’s a rare form of the disease. It took ever-so-long to get a decent diagnosis, involving him staying at hospitals in both Schenectady and Oneonta, cities 75 minutes apart, over a three-week period.

The treatment options, even early on, were uninspiring. The possible side effects of one course of treatment was having a heart attack. So that won’t happen. There are family dynamics needing to be balanced as well.

Who are you?

ITEM: A boy, 7, tested positive in Albany County for coronavirus. He is a student at the elementary school nearest my house, the school my daughter used to attend.

ITEM: The office I used to work at is on the third floor of a building downtown. Someone in another unit on that floor tested positive for COVID-19, it was announced March 16. Out of respect for her PRIVACY, we don’t know which person it is, except it is a female. The units don’t interact much, but they DO share a small breakroom. And I actually got to befriend a number of people in that other unit. So my ex-colleagues are all self-hanging out at home.

ITEM: This is not my usual behavior, but I have developed a fair case of hypochondria. Indigestion manifests in my mind as lung disease. My regular spring allergies/sore throat is, in my head, something worse. At least I recognize it as such.

ITEM: I’m really angry that he has been gaslighting us, that his decision to disband a pandemic team has hindered coronavirus response, and now that he’s FINALLY figured it out, he blames his son-in-law. The buck stops…somewhere else.

And then, at about 2 a.m. a few days ago – because I can’t sleep – I watched a couple Vlogbrothers posts: The Anxious Scroll (Hank) and Together (John). Then I read The Art of Socializing During a Quarantine.

They reminded me of what I used to do 25, 35 years ago: look through my address book and call people I had not spoken to in a while. That was it! In the morning, I was so excited to do it, even before I’d picked up the phone. It was something that got me out of my own head. I’m going to try to do that twice a day, at least.

More good news is that my church is come up with a remote connection.Virtual worship. I suspect we have to bring our own bread and juice.

Bernie Massar, Barnyard (1953-2019)

The Professional Firefighter’s Cancer Fund is a non-profit 501(C)3 organization committed to raising funds for cancer research programs.

Bernard Massar.Jan KostyunKaren, Carol, Lois, Diane, Irene, Bill, Bernie and I all started kindergarten together at Daniel S. Dickinson, where we did K-9, and graduated from Binghamton (NY) Central High School together.

Because Bernie Massar lived in the opposite direction from most of us, down Clinton Street rather than up Mygatt Street, I spent less time with him outside of school than I did with most of the others. I’m not sure if I had even been to his house.

But he’d been to mine at least once. I had a birthday party when I was eight or nine. I don’t know if it was poor communication or something else, but only two people showed up, my Cub Scout buddy and classmate Ray, and Bernie.

He could be the life of the party, betraying his clean-cut look. I hadn’t seen him in a long time when he – and Karen, Carol, Lois, and Bill – attended a high school reunion c. 2006. I see this jocular fellow nicknamed Barnyard with a walrus mustache, who had been fighting fires for a living for 27 years.

Obviously, I have no current history with him. Yet however unconnected we had become, he’d show up unexpectedly in the back of my mind. Now, Bernie Massar, this guy I’d met when we were not quite five – his birthday is a couple weeks before mine, I still recall – has died at the age of 66 and I have this sense of wistfulness.

And from pancreatic cancer, making him the THIRD person I’ve known IRL who died from that dreadful disease in 2019, and the year’s not even half over.

It makes me want to donate to his designated charity, the Retired Professional Firefighter’s Cancer Fund, 4 Loretta Drive, Binghamton, NY 13905. It is a non-profit 501(C)3 organization committed to raising funds for cancer research programs, which has been doing great work, it appears.

L is for the immortal Henrietta Lacks

Henrietta Lacks passed away on October 4, 1951, at the age of 31. Yet her cancer cells are one of the most important cell lines in medical research.

Henrietta LacksHenrietta Lacks was a poor, young, black mother of five in rural Virginia. She was diagnosed at Johns Hopkins Hospital with cervical cancer. Dr. George Gey soon discovered “that Mrs. Lacks’ cells were unlike any of the others he had ever seen: where other cells would die, [her] cells doubled every 20 to 24 hours.”

This NPR story explains: “For the past 60 years Lacks’ cells have been cultured and used in experiments ranging from determining the long-term effects of radiation to testing the live polio vaccine. Her cells were commercialized and have generated millions of dollars in profit for the medical researchers who patented her tissue.”

These incredible cells— nicknamed “HeLa” cells, from the first two letters of her first and last names — “are used to study the effects of toxins, drugs, hormones, and viruses on the growth of cancer cells without experimenting on humans. They have been used… to study the human genome, to learn more about how viruses work.”

Rebecca Skloot is the author of the 2010 book The Immortal Life of Henrietta Lacks. She writes about the African-American woman who passed away on October 4, 1951, at the age of 31. Yet her cancer cells are one of the most important cell lines in medical research.

But Skloot also addresses “the collision between ethics, race, and medicine,” especially for Henrietta’s family, who, at the time of the book’s publication, could not afford health insurance. The writer founded The Henrietta Lacks Foundation in 2010, which has awarded more than 50 grants to many qualifying members of Henrietta Lacks’ immediate family for “health care and dental assistance, tuition and books, job training…” It has “also awarded education grants to the family members of the survivors of the Tuskegee Syphilis Studies.”

And in June of 2018: “A lawyer representing the eldest son and two grandsons of Henrietta Lacks, whose ‘immortal cells’ have been the subject of a best-selling book, a TV movie, a family feud, cutting-edge medical research, and a multibillion-dollar biotech industry, announced … that she plans to file a petition seeking ‘guardianship’ of the cells.

“The question we are dealing with is ‘Can the cells sue for mistreatment, misappropriation, theft and for the profits earned without their consent?'”

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