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’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.”
Ava and Elise enjoy sunset in Manchaca on Larry’s Lane.
My friend in Austin, Jennifer Berliner (Guest #9 on the podcast posted) is in critical condition and in a medically-induced coma for rejection of her heart transplant.
I want to send good vibes and prayers to Jennifer, who is only 44 and celebrated her 20th wedding anniversary just a few days ago.
When I met Jennifer (at a bar in Austin) playing euchre she asked me about blogging, which I have been doing since 2007, and she began her blog with my encouragement. The link I am going to put here is from Jennifer’s blog www.anewheartrocks.com. It is full of wisdom, as is Jennifer.
Thinking of you, Jennifer, and hoping we can resume our card games in Austin. Words of wisdom for sure.
This will be a stream-of-consciousness entry that jumps from topic to topic.
In other words, it will be just like my entire blog. (lol)
We are watching the Andrew Garfield “Under the Banner of Heaven” thing and also just concluded “The Girl from Plainville,” which fictionalizes the case of the young girl who urged her boyfriend to carry through on his suicide threats. While I was not aware of the “Under the Banner of God” underlying factualism (factuality?), I do feel as though I had already seen the story of “The Girl from Plainville,” because we watched it on “Dateline NBC.” Another one that is hitting me with that same feeling of “I’ve already seen this” is “The Dropout.” It was better as a documentary, because, instead of Amanda Seyfriend, you had the real woman who foisted that fraud on the nation. There is a fascinating documentary out about the case, which I saw at SXSW. (It was better than Amanda’s more fictional version).
So, that brings me to some documentaries I have known and loved.
Tonight, on Hulu, we watched “Three Identical Strangers.” I really enjoyed it;l it raised some serious ethical issues. It also has a “surprise” ending that, had I written it, I would be accused of making stuff up, I’m sure. Here is the write-up for this documentary, (should you be a documentary fan, as I am): “Stories of sibling reunions don’t get any wilder than this one, a 2018 documentary that relates how three triplets who had been adopted by different families rejoiced in discovering one another at college age (19) before a disturbing truth emerged.”
We also watched the first installment of “Hacks,” should you be more in the mood for humor, and it was good. After that, we finished off “Candy” (Jessica Biel, Justin Timberlake) which had a rather disappointing denouement.
Here’s another couple of documentaries that sound terrific, and I’ve reviewed a number of little-seen documentaries (“Krimes” was good) many times on my blog, if you scroll through. Here is a second documentary that I want to see: “Birth of a Family” ($3 on Amazon Prime), “The Wolfpack” (HBO Max) and “Tell Me Who I Am.” (Netflix) If you see “Misha and the Wolves” being advertised, that one I’ve seen; it is well worth watching.
I completed almost one entire week of radiation today—well, actually, 3 days and 1 simulation.
No, I am not radioactive, but I am hurting. Hearing that Iowa City wouldn’t make me do this and then ME making me do this out of concern about a recurrence may make me hurt more than if I had just cavalierly taken Iowa City’s advice and said, “Well, if it happens again I can just resign myself to another grueling six months of hell, with no good wishes from 90% of the social circle of women who were supposed to have been my friends for 40+ years.”
My way of saying “THANKS” to the long distance friends and Facebook friends and colleagues from other walks of life, who found it in their hearts to take a second or two to wish me well. What is it they say about your true friends revealing themselves in times of trouble?
Since some of my friends have moved from the area permanently, others have succumbed to Alzheimer’s, and a few have simply shuffled off this mortal coil permanently, I truly appreciate the casual “Good luck!” during what I hope is the home stretch of this ordeal. I was brought up to at least say, “Oh, I’m so sorry” (even to strangers.) I guess that has gone out of style, judging from Christmas Eve. I anticipated I’d hear that more than one time on Christmas Eve, (the first time I “went wide” with the news.) Besides thanking strangers or far-flung non-local folks (“I have always depended on the kindness of strangers” – Vivian Leigh), I have to say that my spouse and kids have been great. I’m currently loaded with lovely flowers from Mother’s Day.
On a completely unrelated topic (my goal here tonight and every night) has anyone else been deluged with those completely ugly stink bugs in their house? Every single night this week one or more of those pesky critters has landed on my arm or wrist or body, causing me to jump up and scream. Sometimes, they crawl on the lighted TV screen. They might have been attracted by the reading light near my seat in the family room. I hope they are done, because I’ve had enough jumping up and screaming to last me for years.