Welcome to WeeklyWilson.com, where author/film critic Connie (Corcoran) Wilson avoids totally losing her marbles in semi-retirement by writing about film (see the Chicago Film Festival reviews and SXSW), politics and books----her own books and those of other people. You'll also find her diverging frequently to share humorous (or not-so-humorous) anecdotes and concerns. Try it! You'll like it!
I have not received Red Carpet placement for Opening Night since 2017, so I executed Plan B, planning to take myself over to the Alamo Drafthouse on Lamar Boulevard to see “Confessions of a Good Samaritan.” This was a film about a woman who donated a kidney to a stranger. When I arrived, the film had begun, so I took myself to “Caterpillar,” instead.
This was a fascinating documentary about a new YouTube fad, changing one’s eye color, which is done, surgically, in India. It sounded very dicey, and, as it turns out, it is.
The documentary, written and directed by Liza Mandelup of the Parts & Labor film enterprise, followed the journey of Raymond David Taylor of Miami as he set off for India to have his brown eyes turned into a color described as “frost.”
It seems that there is a thriving cosmetic industry in Cairo, Mexico, Panama, and India and, of course, the recent deaths of two American citizens in Matamoros, Mexico, (we now know), was a trip for cosmetic surgery. A friend of mine flew to Costa Rica for dental work, so I’m surprised I had not heard of this latest vision fad, but I don’t spend much time watching videos on YouTube.
David had a very rough childhood, even getting kicked out of the house while young, at one point, and he (and most of the other patients) seem to think that “Changing me will change my outlook on life.” As David says, “If I feel sad one more day, I don’t know if I’m going to make it.”
He doesn’t have the money for the surgery, but a well-written letter to BrightOcular explaining his desire for the implants brings an offer from them to come have the cosmetic procedure for free, if he will let the company use his story and his photos for advertising purposes.
We then meet others on this medically unregulated journey, including Izzy, a woman from New Delhi, a young man from Japan, a male underwear model and a beautiful girl from Jamaica, but the focus is on David, which filmmaker/writer Mandelop explained was her attempt to initially start out with three main characters and trace their journeys, with one emerging as central to the story.
She described this engrossing film journey into eye surgery this way: “I wanted to visually convey it. I wanted to do something that people wouldn’t think was cinematic, like eye surgery, but make it cinematic. It became an emotional journey. David allowed me to make the film that I was craving.”
In the course of the journey, we meet David’s mother, who also suffered a rough, abusive life, but tried her best as a young single mother to care for her children on wages of $2.35 an hour. David’s mother and David don’t agree on a lot of things. She is okay with David’s being gay, but she says, “I cannot deal with that if you start cutting parts of your body off and adding stuff.” She adds that she thought he was a great female impersonator. Mom’s point-of-view is, “You’re stubborn. You don’t listen.” She adds, “You’re never satisfied with the way you look.” Others in the film describe the cosmetic procedure as “a bandaid to the past.” Most of the others have selected jade green as the color their brown eyes will be after surgery.
Writer/Director Liza Mandelup, “Caterpillar.”
It is a big blow to David when they do three patients’ surgeries simultaneously and, in the process, he is given jade green eye color by mistake, rather than frost. This will mean another eye surgery to fix the error.
If you are thinking, “This can’t be safe,” you’re right. It is only about four months post-surgery after David undergoes the procedure that he describes it as “the worst mistake of my life” when headaches and visual problems begin. All of the prospective patients seem to want to transform to some ideal person they have created in their heads. When the subject of the film appeared before us in person, however, the audience got the feeling that the subject of “Caterpillar” has, in fact, bettered his life, moving back to Brooklyn and now working as an EMT. He explained his mother’s absence from the showing as his way of “avoiding drama.”
Director Liza Mandelup and Raymond David Taylor, subject of the SXSW documentary “Caterpillar”on Opening Night, March 10, 2023.
Some other patients, we learn, who did not heed the United States opthalmalogists’ warning about the damage the implants have done (or are doing) to their eyes ended up blind or partially blind. One former patient whom David tracks down after he begins encountering headaches and blurry vision said that he woke up after 5 years with blood on his cornea. “I had to remove them or go blind.”
The unfettered access to the surgery and the patients seems quite unusual. That is, until we learn that the leadership of BrightOcular is very circumspect. No one ever comes forward to represent BrightOcular or another entity called Spectra. These agencies exist and are offering this service and heavily advertising how it will “change your life” on social media, with beautiful pictures of patients like David. They are not as forthcoming about the negatives of the procedure. The Indian physician who says he, personally, would not undergo the procedure knows this is a very risky way to change one’s outlook on life and seems to convey that through his reticence to heartily endorse the procedure.
David bought into it with words like, “This is my new beginning. I’m changing,” or “Beauty matters. Beauty gets you through the door.
Musical selections like “Stand By Me” and “I Want to Dance With Somebody,” selected by Music Supervisor Melissa Chapman, merge with the early upbeat theme of positive change seamlessly and add much to the extremely well-done production.
Afterwards, the writer/director (Liza Mandelup) and David, the chief subject, answered questions about the inspiration for the film and its aftermath. Liza said she had been doing research on the apps that can change one’s appearance when she learned of this eye surgery. She sent the BrightOcular company an e-mail asking if she could do a documentary about the process. They were very positive in their response and never really surfaced as an entity. Their leadership remains a mystery.
She cautions that David was one of the few patients who listened to the warnings from U.S. eye doctors, post-surgery, and had his implants removed fairly quickly. Others have faced the need to have cornea transplants and some have gone blind because they refused to give up the implants over a period of years. One patient, asked what she would be content with in regards to improving her appearance, answered, “What am I content with? Just more.”
Among the best compliments of the terrific job the filmmaker did with this riveting documentary was a woman who stood up in the back during the Q&A and said, in heavily accented English, “You mean this was a documentary? I thought it was a movie!”
I signed on to see the “New Yorker” documentary about a polar bear who was known as the “Nuisance Bear.” No dialogue, just the bear, rooting around in the garbage or running away from vehicles.
Thousands of people flock to Churchill, Manitoba, to watch bears wandering around at certain times of year.
The star of this film was a big white polar bear who could be seen banging on a metal fence, hanging around garbage pails, running from vehicles and, ultimately, being shot with tranquilizers so it could be airlifted via helicopter in a net to some far-flung more suitable location.
I couldn’t help but wonder if this was a male or female bear. Regardless of what gender the bear was, it was going to wake up wondering, “What happened?” (I’m sure many of you have been there.)
The Panola Project
This documentary from Rachel Decruz and Jeremy S. Levine made me think of my daughter’s temporary job during the pandemic, helping distribute the Covid-19 vaccine for the state of Tennessee. At the time, she was on hiatus from her normal job as a flight attendant for Southwest Airlines and also helped conduct the census.
In this short documentary Dorothy Oliver of Panola, Alabama, is working hard to get 40 people from the Panola community of only 350 people to agree to come be vaccinated, so that the state team would come out. Apparently, the minimum number for which they would agree to bring the vaccine to the patients was 40.
Dorothy said, “It’s in my heart to do what I need to do to help people,” making me think of another Nashville Film Festival feature film, “Jacir,” where a Syrian refugee living in Memphis had the same sort of good heart (and suffered for it).
It was 39 miles to get the patients to the vaccine and, as Dorothy remarked, many of them did not have cars.
Original music and dancing by Jermaine “Mainframe” Fletcher.
Between 1950 and 1980 during the Cultural Revolution more than 2 million Chinese residents attempted to swim from China to Hong Kong.
The narrator of this animated film said, “Every young person in China wanted to leave.” He cited the greater freedom that was associated with Hong Kong in those days, which is now abating because of the prospect of mainland China cracking down on these freedoms.
The narrator said he had been trying to make it to Hong Kong for 15 years and started trying to emigrate at age 14. If a Chinese citizen was caught trying to escape he (or she) was branded a “capitalist” and would be jailed. He was unemployable in China thereafter and the narrator said he had been jailed 3 times.
He talked about the 3 routes that one might take: East had sharks. The central route was by train. The Southwest route was by water, but it was heavily guarded. Plus, our storyteller had to build a raft to allow him to take his small daughter with him.
They set off on Chinse New Year when the water was freezing, convinced that the authorities would not think any sane person would seek to travel at such a terrible time. They had a live chicken and gifts with them as their cover story (visiting relatives), no real food to eat except scraps, and it took 13 hours just to reach the beach. The journey, itself, took 8 hours.
When his small daughter, now grown, asked him if he was frightened at the prospect of the trip, he said, “There is no fear when there is no hope.”
The Australian documentary went on to say that, upon arriving in Hong Kong, the husband and his wife were given free clothing. He chose bell bottoms (then in style) and she took 3 free sweaters. The father worked 3 jobs, sometimes working 20 hours a day, trying to give his family a headstart in their new country.
This film by Maxim and Eugenia Arbugaeva followed marine biologist Maxim Chakelev in Chukotka in the Siberian Arctic as the walrus population gathered, as they do annually. A lot of it was Chakelev sitting around in his hut and eating something that looked gross out of a can. Chakelev has done this for at least a decade and, this year, the news from the front was not encouraging.
Unfortunately, because of global warming, the ice floes that the walruses normally rest and feed on as they sweep into Chukotka, have largely melted and the walruses arrived exhausted and hungry. Then, they were overly crowded on the beach. A scene that will linger in my mind for many moons, was an estimated 96,000 walruses crowded together on land, with another 6,000 in the water. There’s no dialogue, as the biologist, no doubt, speaks Russian, but there are a few informational subtitles.
Panics and stampedes happened several times a day and the biologist is seen counting the dead corpses of 600 walruses that did not make it and died on the beach, the most ever, in 2020.
The Sentence of Michael Thompson
Michael Thompson was, by all accounts, a pretty good guy living in Michigan with a relatively good job with General Motors and a family.
However, in May of 1996, he was caught trying to sell 3 lbs. of pot and, in a particularly rigid bit of sentencing, was given a sentence of 40 to 60 years for this non-violent crime. One of the mitigating factors was that he had access to a firearm, although the gun was not with him when he was dealing the pot, but was at home in a different location.
Still, Michael went to jail and spent 25 years behind bars for what is now legal in many states. In that respect, he represents 40,000 other prisoners in jail for pot offenses.
The film was directed by Kylie Thrash and Haley Elizabeth Anderson and it drags quite a bit, despite being only 25 minutes long. You pretty much know where this is going from the outset and it took way too long to get there.
I’m sitting in the Illinois Quad Cities, where it is currently 95 degrees. And humid. Very, very humid. It’s 100 degrees in Des Moines and 91 degrees in my old hometown in northeast Iowa (Independence). Because of the humidity, it feels more like 107.
In Austin, Texas, our home away from home, it is 97 degrees. One wonders how the weird Texas power grid will hold up, given its spectacular failure in February of 2021. Texas wanted to have its very own power grid to escape and avoid federal oversight, but they are “on their own” in such power emergencies. And when it’s hot in the summer, AC is a power emergency. And when it snowed in Austin (a rare occurrence) it was a power emergency on the other side of the dial.
“Daily Kos” reported that “intensifying Texas heat is poised to test the power grid on Thursday with demand seen topping 80 gigawatts for the first time ever.”
Running turbines are expected to bolster electricity supplies, reducing the threat of outages as homeowners and businesses crank up air conditioners across the second-largest US state, according to data from the Electric Reliability Council of Texas Inc. [ERCOT]
We lived through the power outage in February of 2021 in Austin, Texas, that killed hundreds and cost many homeless people the total loss of their toes and/or feet. It was truly NOT a good thing. We had to melt down our snowman to be able to flush our toilets! We had to use Saran wrap on dirty plates because there was no water with which to wash dishes (or anything else). Not fun. The catastrophe totally upended businesses like the HEB food store shelves, which were largely bare for at least a week after the storm hit.
Elsewhere today (8/6/2022), near the White House, lightning struck and killed 3 people, critically injuring 4 people. Donna and James Mueller, grandparents from Wisconsin, died. Kentucky has been hit by floods. Missouri also experienced torrential downpours. The U.S. hurricane system will produce an above-average series of storms, up 60%, says the National Weather Service. Death Valley National Park has 1,000 people stranded there amid flooding, and water is becoming a precious commodity in the western part of our nation, where fires have ravaged states like California
The drought is so intense that there is no absorption of any rainfall. Fires have been everywhere in the west, while states like Washington, and cities like Seattle, where only 40% have A/C, are suffering in this nationwide heat wave. Yellowstone shut down. Our national parks are proving to us that these are different days and we should have fought harder to install Al Gore, who probably really won in 2000 and championed global warming. (Just think how much better off we would have been with a president who championed curbing climate change for 8 years, rather than one who started 2 unwinnable wars simultaeously.)
Cities are hitting 110 temperatures in Scottsdale, AZ, and in Phoenix, the current temperature is 106. Heat stress is real. It takes a toll on our GDP. Emergency room visits; Health care costs. All are affected. Cooling centers and city planning will be affected in our murky future.
I hope that Texas’ weird power grid system makes it through this hot period, before I arrive in the fall. Personally, I think it is very unfair to turn the Texas Power Grid into a “money-making” scheme, operating much like surge pricing by Uber and Lyft. More is charged during “peak periods” and the bills, currently, are staggering in cities like Dallas.
By NOT being part of the East or West power grids of this country, the state also misses out on the ability to borrow power from other states in an emergency and on the ability to sell excess power to other states. Only El Paso escaped the chaos in February, 2021, as they had joined one of the two national power grids, which was wise.
Amidst all this chaos, the $369 billion climate investment of the new bill passed by the Democrats and the Biden administration seems very, very sound, if, arguably, not large enough. The goal is to decrease fossil fuel emissions by 40% by 2030. [The bill that is passing today will also provide health changes, including capping Medicare out-of-pocket costs at $2 k and giving Medicare the power to negotiate some drug prices, while also extending the Affordable Care Act for 3 more years].
One wonders how much longer the GOP will continue to maintain that there is no global warming, Donald J. Trump won the election, and Covid will go away when the weaather gets warmer.
I had my final radiation session (of 33) today at Trinity Hospital (Unity Point). It is July 18, 2022, and my birthday is in 5 days.
The staff has you ring a bell (which I had never noticed before today) and I was given a small stone engraved with Courage, Love, Strength and a card with what looked to be about 30 names.
I have been driving down to Trinity at a quarter to 1 p.m. every week day since May, with a hiatus after session 19 when we went to Texas for our Family Fest (family reunion).
During the sessions, I have gotten to know Brie, Lora, Alysson, Susan and some of the other technicians and they have performed admirably. Alyssa will graduate this coming Thursday from her online university program in radiology.
I wanted to take something to the girls, and, of course, food was the first thing one thinks of, but I, for one, do NOT need another doughnut and I think perhaps some of the technicians don’t, either, o I tried to think of something tied to my recent Texas trip.
The bags that were given each of us who came to the reunion were so colorful and nice that I asked my daughter-in-law for 4 of them. Then I had to think of what to put IN the bags.
After some soul-searching (tee shirts? Key ring?) I realized that I had an entire basement full of books…books that I wrote over the years since 2003 and on many different topics. In addition, since I have at least 2 series with 3 books in them (novels and short story collections), they could mix and match and share with one another, selecting the ones they felt they would enjoy most. If none of them suits their fancy, they can donate them to a local library, but these are books that I painstakingly wrote, myself, so there is a personal element in giving them something I “made.”
I read (on WebMD) about other gifts from other patients, but almost all were food. I do admit that food is tempting, but that will be my next big hurdle: shaping up and not eating bad foods, so I went with books. I do wish I had been “dressed” in my street clothes when asked to “ring the bell” but I had just climbed down from a radiation table and, as you can see, had on a beautiful hospital gown of nondescript style.
I had a meeting with my radiologist, Dr. Stouffel, who felt I had done well. I will see him again on Aug. 11th.
It sounds like, from this point on, I merely take the Anastrozole pills I have been on since February and then I have a follow-up mammogram no less than 6 months after the end of radiation. That will be January and I will be in Texas. When I asked whether I should find a mammogram place there or wait until I returned to this area, the doctor said I needed to do it here so that the previous monograms taken could be compared. That will be more like 10 months before the next mammogram will take place.
I asked if this was in any way risky and he said it would not be.
So, from now on, while awaiting my August colonoscopy, my dental exam, and my vision screening, I am done (I hope).
I hope for a return to normalcy and an end to the 70 doctor visits I’ve experienced in 8 months’ time
Two-year-old Barrett Golden grabbed his mom’s phone and—-hungry for a cheeseburger—used DoorDash to order 31 McDonald’s cheeseburgers. DoorDash delivered and Barrett ate only half of one, so, for $91.70, Barrett’s mother, Kelsey Golden, offered the neighbors free lunch on social media.
In Texarkana, Texas, fish fell from the sky. A meteorologist at NWS in Shreveport said, “We’re kind of confused as to how it happened as well, to be honest.” First, the theory was that a waterspout had picked up the fish from a nearby water source, but the National Weather Service reported no such weather activity near Texarkana, according to the “Dallas Morning News” at the time of the January event. Flooding was mentioned, but the fish were on rooftops and truck beds. Evidence ultimately pointed to birds, specifically cormorants, which must have regurgitated the fish or dropped them while flying over the town with the shad in their beaks. The entire episode made me think of Tom Cruise’s film “Magnolia.”
A California court has ruled that bees are fish. Bumblebees are “invertebrates,” that lack spines and Endangered Species Act environmental lawyers argued that, because the law defines “fish” as “invertebrate,” bees should be included. A state appeals court agreed, allowing the bumblebees to be protected by the Environmental Species Act.
When I received the July 8/July 15th issue (p. 14) of “The Week” magazine, I was most struck by the article on page 14 that relayed how the recent Roe v. Wade reversal is viewed by the rest of the world. There’s no question that a woman’s decision to have a child–whether intentional or unintentional—is probably the biggest economic decision that female will ever face.
It’s pretty powerful. Here it is:
How They See Us: U.S. Rolls Back Women’s Human Rights
By reversing Roe v. Wade, the U.S. Supreme Court’s radical conservative majority has delivered “a profound and ominous setback” for women’s rights”—and for democracy, said The Irish Times in an editorial. Even though more than 60% of Americans believe abortion should be legal “in all or most circumstances,” the court’s life-tenure far-right justices have now cleared the way for abortion bans to take effect in about half of the 50 states.
The U.S. thus joins Catholic El Salvador, Nicaragua, and Poland as the only countries to roll back abortion rights in decades. Some European countries, it’s true, restrict abortion at 12 or 16 weeks, earlier than Roe, but we also have largely free health care, so in practice, European women have easy access to abortion. Here in Ireland, the procedure was legalized by a referendum in 2018, spurred by the 2012 death of Savita Halappanavar, who was denied the abortion that would have saved her life as she miscarried an unviable, wanted pregnancy. Halappanavar died in an Irish hospital as her husband begged doctors to help her. The U.S. has doomed itself to a future of similar tragedies.
For any European who has ever been pregnant, said Rhiannon Lucy Cosslett in The Guardian (U.K.), the news from America “felt visceral, as vicious misogyny often does.” Pregnancy is a wholesale takeover of the body. I wanted my child, but having been through it, I know that forced birth would “amount to torture.” American women and girls, henceforth, will suffer, and at the explicit direction of the state. But not all of them, said Marius Oprea in Mediafax (Romania). Most rich women will still get the care they need, even if they have to travel out of state. But poor—especially Black, women—will either have unwanted children or try to self-abort. The U.S. health care system “is utterly unprepared” for the wave of abandoned newborns and mothers in crisis. Expect a health crisis of “apocalyptic proportions.”
The ruling is further evidence of America’s “democratic collapse,” said Le Monde (France). The extremist Catholic majority on the court is the product of “the tyranny of a minority permitted by an electoral system outrageously favorable to the most conservative states.” Donald Trump was defeated in the popular vote, yet became president anyway. He then nominated 3 ultraconservative justices who were confirmed by a Senate whose makeup is permanently skewed to favor rural voters at the expense of the Democratic majority.
President Biden often talks of a world at war “between democracies and autocracies,” said Mariam Martinez-Bascuan in “El Pais” (Spain), “but we can no longer be sure the U.S. is in the former camp.”The repeal of Roe is just the latest example of Republican “obstinacy,” from the Jan. 6th assault on the Capitol to the “dying rage over firearms” and efforts to restrict the Black vote. And like the other examples, the abortion ruling will surely hurt America’s standing in the world. How can the U.S. pose as the beacon of freedom against the authoritarian darkness of Russia or China, when it denies its own female citizens their basic human rights?”
This will not be my last Monday of radiation, but it may be the last full week of same.
There was a very interesting article that I ran across about Clinical trials for a new method of dealing with breast cancers, which involves freezing the tumors, which then implode. It sounds ideal, as there is no incision, no radiation, and all the prospective patient has to do thereafter is take one of the aromatase inhibitors. They have found that the “implosion” of the tumors actually seems to stimulate the patient’s own immune system to deal with whatever residue is left after the deep freezing. Wish I could have been in that M.D. Anderson study, but that would have required me to live near Dallas, Texas. I did want to mention this for the benefit of the 1 in 8 women who might be diagnosed with breast cancer and fall into the category I fell into, which means late-in-life presentation and small and no metastasis.
It sounds like this method could revolutionize the treatment of breast cancer (and, possibly, other cancers. The idea of having NO scar and NO operation is tempting, and the fact that one does not have to undergo radiation afterwards is equally tempting.
Yesterday was Father’s Day. The pictures I will post here are of the restaurant I took my husband to for dinner. I have to admit that I was planning on cooking a pork loin roast with a new recipe for the seasoning but I apparently had a senior moment and froze the sucker. It was as hard as a rock when I realized my faux pas.
The Captain’s Table
We dined, instead at the Captain’s Table just below the hill that we live on and roughly 2 miles away. It was beastly hot, but the outdoor veranda was lovely and my husband enjoyed a shrimp tempura dinner while I had the salmon with a brown sugar/mustard sauce.
He also received a Super Box from the children, which will allow us to get viewing on our Texas set, as we have one here. We are currently watching “The Offer” with Miles Teller, a 10-part mini series, that tells about the drama behind the making of “The Godfather” half a century ago. I will be reviewing it here after we watch episodes 9 and 10, which remain.
After that, we’ll move on to Dark Winds, which is recommended, about an investigator on an Indian reservation.
The father in house also got 3 lovely cards, a gigantic bottle of Seagram’s 7, andan Amazon gift card.
At the risk of becoming a “woe is me” blog, I am sharing today’s latest cancer concern.
I made it through my 16th day of radiation with no bad side effects, but a slight amount of redness. Some nurse assistant (whom I had never seen, although she seemed to know my name) handed me a green printed handout that said I should add 1/4 cup of vinegar to 2 quarts of water and then soak a cloth in this and put it on my slightly red upper right quadrant. I am sorry that she handed me that really antiquated advice at that moment in time, because I was feeling fine until then and the redness was quite slight.
I thought when she told me this that it sounded like advice from the 1920’s. Why do I say that? My mother had a favorite story about her bad sunburn when she was 20 in 1927. She was supposed to be in a girlfriend’s wedding as a bridesmaid and they had to sew her into her dress. After that, she described exactly this therapy for her bad sunburn: vinegar in water. Surely there is something more up-to-date and modern in 2022, nearly 100 years later?
So, my husband and I (who had been actually out CELEBRATING how well I had been doing, dining at the TreeHouse in Davenport) secured a vat of vinegar roughly the size of my head (K & K Hardware) and carefully measured out this concoction and I spent most of the evening of 6/3 applying carefully wrung out cloths to my right breast.
This turned out to be a very bad idea.
In the night, I woke up in pain and realized that the skin under my right breast had totally sloughed off. This, despite having NO problems up to the point of the vinegar soaking. The difficulty is keeping the area under a 44D breast dry to heal, which I well know, so I was actually sleeping with a wash cloth tucked in strategically, but it didn’t help.
I now am very, very red and in a fair amount of distress and some pain, but I showed up for my radiation on time and, when I did, ran into Daniel, the male nurse, who asked how I was doing.
Me: “Not that great, Daniel. All of the skin under my right breast has left the building and it hurts like a son-of-a-bitch.” (At the time, I was waiting to be shepherded back to the radiation table, where I have spent the past 16 week days. This day would mark the halfway point of my 33 day ordeal. I was in “the pond,” pictured below.)
Daniel spirited me away to an examining room and secured a radiologist (not my normal one), who nixed radiation for the day and prescribed the ointment I had asked for much earlier in the festivities. (I wanted to have it on hand when/if things got bad). With a name like Silvathiazole, it immediately conjured up memories of the sulfathiazole ointment my parents always applied to injuries during all my growing up years.
Now I am applying this white salve (a prescription with sulfa in it) for 3 days (Friday/Saturday/Sunday), putting it on four times a day, [but not 3 hours before radiation]. I am scheduled to meet with my oncologist at 2 p.m. on Monday, and I have been told to show up a half hour early on Monday, to make sure that it is okay to radiate at all on Monday.
Known as “The Pond,” one waits for pick-up to the radiation room here.
The problem with all this is that I have a very narrow window of opportunity to get all this done before boarding a plane for Texas on June 30 to fly to Austin for the Family Fest. I was supposed to have been “done” on June 27. That has now become June 28th. Then, of course, we have to drive to Chicago, which will probably occur on the 28th or 29th—unless this doesn’t heal up. And we fly on the 30th.
Do I really expect this to heal up? It is impossible to keep this area dry. I learned this the hard way when all of my stitches from my low faneuil incision tore out after my second C-section in 1987. That was an emergency room visit with my then-19-year-old son doing the honors, as his father was busy being plant manager at a Deere plant.
So, whoever made the 1920-era suggestion of vinegar in water for ME, in particular: VERY BAD IDEA. I realize that the cumulative effect of the radiation is just now evidencing itself, but someone should have given some thought to the concept of trying to keep the midriff and under-the-breast area of someone with 44D breasts DRY during this sensitive period. Now, I’m paying the price and the jury is out on whether I will make it through 33 days of this or not by June 30th, when I leave.
Keep in mind that no less an authority than Iowa City, Iowa, told me that they would not have radiated me at all had I had surgery there. While I felt that some of that was ageism, some of that was sexism, and some of that was probably just the insurance company not wanting to pay for anything they could avoid, I am still in agreement that helping reduce the risk of recurrence was worth trying to go through radiation. Not sure if cutting off “the boost” part of the process (i.e., the last 5 days of the 33, when they aim the beams directly at the hole left by the incision, rather than simply radiating the entire upper right half of your body, as it seems we are now doing) will be enough. Not very happy that I was handed the green sheet with the 1920-era advice on it, which I blindly followed.
I remember asking how much of this 33 days would be necessary to do me any good after my May 6th Iowa City visit, on upping the odds of no recurrence and being told nothing very firm. It sounded, to me, as though the final 5 days might be omitted without that much loss of the % benefit, but what do I know?
This has really shot down our premature celebration of making it through the first half uneventfully. I can’t help but feel that the introduction of vinegar and water to treatment—which is about as old-fashioned as you can get—was a very bad idea. And I am crossing my fingers that this salve—which I asked for right out of the box for the time when this started to happen, which could have been predicted from the get-go given my uber-sensitive skin—works.
So, aside from the Criterium (9:45 to 11:45 a.m. in the Village of East Davenport) in the Quad Cities, there did not seem to be much going on that I would have enjoyed. I can’t imagine that I’d have beaten a path over to see the bicycle race, and watching the Indianapolis 500 on TV can be doe anywhere.
So, I’m in Chicago right now and, as I post this week, I’ll try to post some of the wondrous creations made of Legos that are now the main exhibit t the Museum of Science and Industry.
But, as a lead-in, I’ll post a few pictures of the old planes from WWII, the Kitty Hawk first plane replica and my daughter and I pretending be various things in cut-outs (astronaut, in her case).
Come back in the succeeding days, as I attempt to get the pictures off my phone and onto my computer, which is not as easy as you’d think.(We have new phones, and apparently, if you don’t use “small,” the pictures are too complex to forward.)
So, here are the first few shots from the Museum of Science & Industry in Chicago.
My best friend in Austin, Jennifer Berliner, died today (May 23, 2022). She was a heart transplant survivor and 44 years old. She and Adam, her husband, had just celebrated their twentieth wedding anniversary.We met playing euchre and hand-and-foot canasta and I encouraged her to start her blog, www.anewheartrocks.com. The post below is from Jenny’s blog and written some time ago. At one point, Jennifer wrote: “Honestly even if the end game is death, at some point that is okay too. Death is not a personal failure, it’s a biological ending. If I die, I won’t take it personally.”
Rest in peace, Jennifer. You fought the good fight. I will miss you, and so will the rest of your tribe.
“Maybe if I can shed light on how I endured a heart transplant, cancer and the death of my mother all at the same time, then maybe it could bring comfort to others facing their own adversity.
I’ve danced with death for so damn long that sometimes it’s work to remain optimistic, but I try. So many things are out of my control, and this infuriates me. In the face of these challenges, how do I instill hope in myself and others?
God, grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference. ~The Serenity Prayer
I wish I could share some recipe with how I overcame my adversities, unfortunately my recipe is complicated and unique to only me, the chef. No one wants to hear that it takes time and persistence. People want a quick fix, a panacea, and I don’t blame them. When you’re in pain, you need it to end quickly. Maybe from my list you will walk away with one or two strategies that I know helped me to go from surviving to thriving.
How I Avoided Death in 10 steps:
My top 10 survival guide is listed in random order, except number 1, because it’s the most important and that is: Do not attempt this on your own. Humans need other humans. If we are left alone we will die. When you are faced with insurmountable adversity, you need one person who will walk with you on this bumpy road.
Admittedly that one person can get exhausted, so ideally you need several people to
support you and walk at different times. A support system or what I call “my Tribe” includes my family, friends, fellow congregants at my synagogue, and friends from my card clubs. (I love playing cards. I’m 43 years old, but I’m really an old lady on the inside).
There was a time I begged for death. For months on end, during my Chemo to treat bone cancer, I contemplated dying. I only survived that experience because of the love of my family and friends. Then when I was faced with a heart transplant, my family was still at my side, and now I also had a husband who became an amazing caregiver. Adam spent months in the hospital with me. He was exhausted and yet his commitment never wavered. My sister also helped me out significantly during this time when I lived in her home for two years. And my friends, were incredible.
After my first battle with chemo, I made a pledge to myself that I was going to have good friends by being a good friend. Twenty five years later, these same friends were at my side. Taking time away from their jobs and children to put on gloves and stay days and nights with me in the transplant hospital. Incredible.
I have many people I love, so I will endure any pain to remain on this planet to be with them; likewise, their love keeps me afloat. A good support system is vital to my existence and well being. If you don’t have a support system, a good place to start is to get yourself to a place of worship. The community will surround you and it will lift you up in ways you can’t imagine.
I’ve been in counseling on/off for most of my life. I need guided relaxation and hypnotherapy to get me through painful procedures. Then I need the talk therapy to get past the trauma.
I’ve also had to learn (and still relearn) coping skills to get me through the traumas I’ve experienced. We are not born with inherent knowledge of coping skills, they are all learned, so I go to counseling at different times in my life. I’ll keep this one short and sweet, you get the idea.
Ok, medication is really how I should title this section, but you get my point.
I don’t take anything that isn’t prescribed because I am a transplant recipient and even a herbal mouthwash can prevent my anti-rejection medication from working. With that said if I’m in pain or facing an uncomfortable procedure, I will not let a doctor or nurse shame me into thinking I’m not brave (I’ve already proven I’m crazy brave).
I am no longer willing to soberly submit myself to a drill in my back (bone marrow aspiration) or a 2 hour MRI (in a casket). My mind and body have their limits and if medication can help, then I’m taking it.
My Mum was always at my side cheerleading me on while she received more than her share of mistreatment and suffering. My Dad also spent countless nights at the hospital. The scales were terribly unfair towards both of them, but particularly towards my Mum because I lashed out at her the most. I was rotten and had terrible coping skills, but somehow she persisted too. I think like a cub I just followed my mama bear. The biggest gift my Mum gave me during this time was being with me, so that I wasn’t alone. This empowered me, fueled my grit and gave me the ability to keep the course. Misery loves company.
I also focused on the idea that there’s light at the end of the tunnel, that someday this Chemo will be over or that I will heal from my heart transplant. Honestly even if the end game is death, at some point that is okay too. Death is not a personal failure, it’s a biological ending. If I die, I won’t take it personally.
5, Goal Setting & Rewarding Myself:
My idea of setting goals happened organically. I was refusing Chemotherapy at age 15 and I bribed my parents for money over the course of many months to help me buy a car. I’m not proud of this manipulation, but we both got something we wanted out of the deal. They got a more compliant, less hostile patient who did her Chemo and I got to dream about my car and freedom. (My car was an old beater and I loved it).
Since then I’ve kept my eye on the apple. I have set many goals in my life and achieved every single one of them. It takes time, patience and mindfulness to set and achieve your goals. These steps can be slow with setbacks at times. However, the reward is sweet.
I’m still setting goals, most of which include traveling somewhere. On my bucket list after my heart transplant is going to Paris. This is a big one and I’m hoping to go next year. I’m planning now for it.
6, “It Could Be Worse” & “Not Sweating the Small Stuff”:
I’ll use bumper sticker mantras any day if will help.
Not sweating the small stuff is easier said than done. The more I’m faced with challenges, the more I have to let some things or even relationships go, so that I have the energy to battle with the life and death issues in my life. Some might say, that I have developed a fuck-it attitude or that I don’t care. This is actually not true, I care so much that I have to walk away sometimes or I will make myself physically sick from worry. I have to set boundaries sometimes, and these lines can be tough to draw.
“It Could Be Worse” is a mantra I’ve used many times to get me through painful procedures. Like an athlete before the big game, I have to use self-talk to get ready to do a procedure, like when I talked myself into staying strong right before going in the OR for my heart transplant. I was tearful at the idea that my unknown donor died leaving me such a profound gift. I was so grateful that I had a heart. I spent months exploring this issue in therapy. And when it came down to it, I thought it could be worse: my donor could’ve died with viable organs and not be an organ donor and I wouldn’t have a heart. It really could’ve been worse.
In the meantime, I encourage you to consider what mantra helps you and is uniquely you?
I was born at the right time, in the right country with the right resources.
I was born in time when Chemotherapy was available and had been honed over 25 years to become more effective at curing childhood cancer. Then when I needed a heart transplant many years later, Cyclosporine (an anti-rejection drug) revolutionized the body’s ability to keep the transplanted organ, increasing my chances of survival.
Finally, not many want to hear this but this, but it’s the brutal truth–I was born with access to the right financial resources. I could afford health insurance and I was born in the United States, which performs 66% of the all the transplants in the world.
In many ways, I won a lottery. The odds that I slipped through the time-space continuum to make all these things happen, which have contributed to my ability to cheat death, not once or twice but three or four times is incredible.
I can’t not explain my luck other than the circumstances of my birth. I have deep gratitude for my position and realize that many others at home and around the world do not have my opportunities.
I know that time also makes a difference and I’m mindful to honor those they went before me. My paternal grandfather died at age 36 in the 1960s with his “body riddled with cancer,” per his autopsy. I suspect he had the same heredity cancer than I had (something I only discovered in the early 2000s, thanks to the Genome project and the advent of the internet). My grandfather and others like him, endured great suffering to help our medical advances.
American values teach us that if you work hard enough, your merit will be rewarded. However, I believe that luck also plays a part in making someone’s dreams come true. Well how do I get Lucky? I don’t know, and for that reason I apologize that Luck is even on my list of how I cheated death, because you can’t recreate luck. It’s unfair.
For years, I avoided internet searches and I didn’t watch any videos about Heart Transplant prior to having the surgery. That’s pretty unbelievable when you consider I read reviews just to buy new bed linens. When it came to transplant, I was too scared. This surgery is not optional and I just had to plow through it, so why get bogged down in the gory details. Ignorance is bliss.
Instead I met face-to-face with a few heart transplants recipients that I met through friends (we’re a small community). Interestingly they all approached me the same way. They told me briefly about the what’s, why’s and where’s but when it came time to really get down to the details, they said “ask me questions. Every person’s experience is different, so rather than me just go on and on, ask me your questions and I’ll tell you my experience.” Wow, this blew my mind. Especially, now that I’m on other side, I understand why they approached our talks with opened ended questions and avoided advice giving.
Everyone has their own journey. When I mentor a pre-transplant recipient, I don’t offer advice, instead I listen, I validate, I empathize and I share my feelings. Ok I will offer this advice, when in the hospital always pack an extension cord, so that your cell phone can be in the bed with you and you can reach it. Jokes asides, no one can predict how well they will do during the transplant, so all I can do is sit beside them on their journey, and perhaps my presence encourages hope that they will survive and thrive too.
Laughter really is the best medicine. During my darkest days, I find that I watch the most vapid, silliest TV shows or read trash novels. I don’t have the heart for violent movies (pun intended). But give me back-to-back episodes of “Schitt’s Creek” or “The Derry Girls” and I’m a happy woman. I need light hearted humor and laughter to offset my tears.
Prior to my transplant, I was crying a lot. I was depressed and grieving my Mum’s terminal cancer diagnosis. My brother-in-law, a funny guy, set his ring tone to a woman sobbing, so that when I called he heard tears. He said he wanted to be prepared to take my calls. I quickly stopped sobbing myself and laughed until I was out of breath. The Greeks taught us that Humor is a powerful antidote to Tragedy.
The secret to Humor in the face of adversity is that you have to actively seek it out. Be mindful to block media that takes you down and instead focus on the stuff that lifts you up. Yes, I am telling you to binge watch your favorite TV shows.
Asking for Help & Self-Care
The first time, I reached out to ask if friends could make meals felt awkward and embarrassing. I couldn’t eat restaurant food because it was too salty, so food had to be prepared at home during my quarantine. I was physically incapable of cooking, my sister & her husband both had full time jobs and a baby, my Mum had cancer and my Dad was her Caregiver. My husband worked in Austin three hours away and when he was in town over the weekend, he would make low sodium casseroles to last for the week. But if he couldn’t cook them, we had a challenging week.
When a friend said to me, “let me know how I can help you,” I wasn’t prepared. Don’t let the moment just flitter away in fear and awkwardness like me. Be prepared for a real conversation the next time this question is asked. Consider replying with, “Well, how or what do you think you’re up for?” Then be ready with a small list they can choose from: meals, babysitting, yard work, driving or attending doctor’s appointments.
Most of your loved ones may be unsure of how to help you. Each person has a desire to help, combined with some sort of skill that can be brought to the table, so take a moment to consider their best role. My neighbor adores dogs and she was invaluable to us with last minute pet sitting that turned into weeks at a time.
Asking for help is a form of self-care, but more specifically the act of “self-care” is doing things that make you feel better. Maybe it’s taking a walk in the park. Ok, well with Congestive Heart Failure it might not be a walk, so take a beautiful Sunday drive.
Me, I love to go to the movies. For those two hours, I get to escape and enter another world. My dad and I would go to the Dollar Theater once a week when I was in chemo. We snuck in candy from the nearby Walgreens. The whole ritual was fun and a diversion from my grim reality. Caregivers, just as much as the patients, must engage in self-care to combat Caregiver Fatigue or Exhaustion. The point of self-care is to actively pursue JOY. So it is my hope for you, especially during times of adversity, that you are mindful of experiencing JOY every day.
Bonus 11) Try to be “OK” with not knowing….
I’ve talked to many people facing a heart transplant and the answer they really want, that they need to hear is: Am I going to live? Am I going to be ok?
No one, not even the doctors can give a straightforward answer on your mortality. Sitting with the anxiety that your dying (that’s the only way to qualify for an organ transplant), compounded by the lack of knowledge of when you’ll get The Call for the transplant surgery, only to then consider if you’ll live through the surgery…well, this will make you lose a lot of sleep. You may experience restlessness, anxiety, bouts of crying and maybe even agitation at times. This is normal considering the extraordinary circumstances you are under as you wait for an organ transplant.
Connect with someone who’s had a transplant or is in the chemo chair next to you. If you’re on the other side then consider mentoring someone on the wait list. Your hospital social worker or nurse coordinator can make introductions. Or join a Facebook group in your area for your specific issue. When you’re facing a medical crisis, you realize that the community attending your hospital is relatively small.
You do not have to do this alone. And there will be moments when you will be in the dark and it’s feels vulnerable, annoying like info is being purposely withheld (it isn’t) and ultimately, thoughts wander to those of death and dying, another thing out of your control. Take deep breaths, cry when you need to cry, and consider what coping strategies you can use to get you through moments of anxiety. Me, I would call or text a loved one or a friend.
In closing, find comfort in both prayer and the science behind the medicine. Transplant recipients are chosen for the likeliness that will do well in the surgery. Check your transplant program’s surgical outcome rates, they should be posted everywhere. Finally, remember you are surrounded by your medical team, family, friends and supporters from all over the world rooting for you.
If you need to chat or you have questions, send me a message or email. I read every comment and reply.
Thank you for taking the time to read this blog post. I hope that in some small way it helped lessen your burden for whatever troubles you are facing.”