George’s Story

Site created on September 2, 2018

The following is a report of George's health events that took place June through August regarding his lung cancer. The Caring Bridge journal entries begin in September.

George felt lousy in June, with a cough, chest pain and fatigue.  After a chest x-ray, his primary care physician Dr. Joanne Lepkowski ordered a CT Scan. When she got the results on July 12, she told us he had a malignant mass in one lung and a life-threatening blood clot in the other. We went to the ER, but the docs there said the blood clot was small. They just started George on an oral blood thinner. 

We met with a thoracic surgeon Axel Joob (pronounced Jobe) on July 18. He said he wasn't so sure about the cancer and ordered a PET scan.  He said the mass is concerning but he wouldn't say cancer (as the radiologist had reported) without more tests. George had seen this doctor before because of two inert nodules in the lungs. Those never changed over the course of a few years. 

George had the PET scan on July 26. Dr. Joob said it showed "activity" in shoulder, hip and pelvic bones, as well as the lung. George's shoulder had been hurting a lot in the summer; we thought it was arthritis.  

On August 8, George had a biopsy of some bone lesion cells near the base of his spine. The doctor said it was the easiest of the three places to get the sample. 

On August 15, Dr. Joob said the biopsy showed cancer in the bone areas, which came from the cancer in his lung. He said we'd see the oncologist, Dr. Mebea Aklilu, at Illinois Masonic, the following week and hear more about the cancer and treatment options. Dr. Joob also referred George to Dr. Santosh Yajnik, a radiation oncology doctor, for some "focal radiation" in the shoulder area, for George's pain. 

On August 22, we met with the radiology oncologist and the medical oncologist, their nurses, and a palliative nurse practitioner at the Cancer Center at Illinois Masonic. It seems like a good place with good people. Our insurance, through the Chicago Board of Education (fought for by the Chicago Teachers Union) is good.

The medical oncologist Dr. Aklilu said George has Stage 4 lung cancer that has spread to several areas in his bones (shoulder, spine, hip, pelvis) and lymph nodes. He said average life expectancy with treatment is one year or two, depending on the kind cancer cells and how it will be treated.  Treatment is to control the cancer, which is probably incurable.  The doctor said it was not typical that his (small) lung tumor metastasized to his bones so quickly. (I asked.) An appointment was scheduled for two weeks from then, after the lab has looked at the  biopsy sample taken in August. They're  looking for proteins or mutations – to determine the systemic treatment. This is whether he'll take chemo or something else. I think he said the cancer is the small cell variety and is amino carcinoma (from the glands). The radiation oncologist Dr. Yajnik ordered five courses of radiation in the shoulder and near his tailbone,  with the goal of easing his pain.  

The palliative nurse prescribed  slow release morphine and some other stuff (that he's already been on) as needed for breakthrough pain. He was also given something for the cough, which may or may not help, doctor said, and some stuff for inevitable constipation from the added opioids. 

The next day, on August 23, George drove himself to the Cancer Center, accompanied by Josh (because Sam was busy and I had to go to work), who helped him during his radiation "planning session." Later that night he fell to the floor, woozy from the pain killers. Sam lifted him up.

George had his first radiation appointment on Friday, August 24. We felt pretty happy to begin doing something after being pretty sure for six weeks that he has cancer.

For three days he tried morphine, but it really bothered him, while not helping that much with pain. On Saturday, August 25 he decided to stop taking it. He couldn't function well at all. He could barely walk and had a hard time moving his arms and even gripping things. 

On Monday, August 27, the palliative care nurse practitioner visited in the morning and planned some different pain meds. He went to radiation that afternoon. 

On Tuesday, August 28, on our way to his radiation appointment at 1 p.m., George got disoriented. He was breathing weird and was really agitated. Our nurse had warned us about dehydration and everyone is pretty sure that's what happened and why he got so sick. He had barely eaten food and he had drank little for about five or six days while taking so much pain meds and getting the first two doses of radiation. 

So, instead of his treatment, the radiologist nurse and doctor sent us to the ER,. We were there from 2 to midnight. George was very out of it, disoriented, trying to get out of bed, begging me more than 100 times to help him get up (but the ER people didn't want him to stand), drugged (they wanted him calm for another CT scan), and hurting. Even before cancer, George has hurt a lot in his back. Being on his back that whole time in the ER really hurt. The IV fluids and oxygen helped. The CT scan shows more lesions in his liver.

On Wednesday, August 29,  he got some sleep and ate a little and had the radiation treatment. He stayed the night in the hospital and then had another radiation appointment on Thursday, August 30. He also had an MRI of the brain and an ultra sound of the heart. The nuerologist said he's had small strokes. The cardiologist said he's had heart attacks. We went home late that night. On Friday, August 31, I went to work and Danny (who came in to visit on the 28th) and Sam took George for his final radiation and a meeting with his radiologist. 

On Saturday, Sept. 1, I called his primary care doc and asked her to get the ball rolling on ordering a hospital bed and bedside commode for our house.  My mom brought over a shower chair. He visited a little with my mom and Dan. In the past week he has little interest in talking to anyone, on the phone or in person. Later, George had a very rough night, coughing a lot.

Newest Update

Journal entry by Sharon Schmidt

We're getting ready for the interment of George's remains at Mt. Hope Cemetery this morning at 11:00. George would have been 72 years old today. He died 11 days ago.

Pastor Mark and I talked yesterday at Loop Church about what we want to do today. The visitations last week at Mt. Olive Church, on Thursday, Sept. 20 and Saturday, Sept. 22, focused on family and friendship. We honored George's work at the funeral service on Saturday, Sept. 22, with five of us talking about his life of service.

I hope we will be able to focus this graveside event on peace and joy and love, what George yearned for and received in this life and, I believe, where he is now, in everlasting communion with God.

Oh my throat...it swells up like my eyes.

Last night I brought up to our room the latest pile of magazines that came to our house recently. George subscribed to many publications. I started reading National Geographic when I got into bed. I couldn't believe there was an essay about hope. I read a few excellent paragraphs before I noticed it was by an author I like, Anne Lamott. I put it at the end of this post.

I want to tell a story today at the gravesite about hope. It's when I'd known George for about four weeks and we went bike riding in Portage Park with Danny. It took place in March 1998, about a month before I took this photo of George and Dan, also at Portage Park.

I first knew George from reading Substance. I saw his righteousness and passion in its pages. Then I met him and I was blown away by his intelligence, endurance, and experience. He seemed to have done everything while still doing more. I saw how injustice enraged him and he was compelled to fight. He knew that bullies had to be forced to stop and bosses had to be forced to do the right things.

We worked together on the first story I reported for Substance in February 1998. It was so exciting to be with George, who cared so much about telling of this injustice. Mayor Daley and the Chicago board of education were going to wipe out a wonderful school, Jones Commericial High School, which provided paying jobs for all its students, most of whom came from poor homes on the south and west sides of Chicago and would never have had a chance to get into these business-oriented jobs without the school. The mayor, Paul Vallas and Gery Chico were closing it because they wanted to get rid of the Pacific Garden homeless mission, Jones’ neighbor on State Street. By changing Jones from a business school to a selective enrollment college prep for more advantaged students, they'd “have to” expand the building and move out the homeless.

After we published the March 1998 issue of Substance, with my story on page one, above the fold, and with dozens of other important pieces in the issue, too, we became friends and I fell in love with George. And I spent time with him and Danny, who was eight years old, without working on Substance. One warm Saturday, the three of us went for a bike ride.

Previously, George had bought several bikes at garage sales, so there was one for me. This was typical of George, to always have extra – a full coffee pot, extra bundles of Substance, his closet containing more than a dozen purple dress shirts, which he was wearing to Bowen High School at the time.

I knew George was good. But on that bike ride, I saw his tenderness with Dan and the joy he had in being with his son and me, and he looked blissful, not like the guy who kept pounding out the outrages on his keyboard, and I loved him even more.

I figured out then that George didn’t love the fights he fought. He liked his work and liked to write, and he was so gifted. He wanted people like me to tell the truth about what we saw where we worked. But he didn’t work for the fight. He fought racist policies, gangs, inadequate pay and corrupt leaders because they hurt people.

He fought so others could have that happiness he never took for granted – like the freedom to bike in a safe park, the time to spend with a son he adored, the means to have an extra bike for me.

Today, I'm also going to mention, again, George's love for poetry and his happiness in its beauty. We are going to hear two poems George loved. The main poem I think of George and joy is The Lake Isle at Innisfree. He recited it to me when we married; he'd recite it any time I asked. I think Sam will read it aloud for us. The other poem we're going to hear in honor of George and his desire for happiness (for himself and others) is the William Blake poem that his brother Tommy told me he loved when he was young. Josh read this poem to him on the day he died. We will hear this, too, today, although Josh said he doesn't want to read today.

Pastor Mark will lead us at the beginning and at the end with scripture reading and prayer. I'll talk and we'll hear the poems. And I think we may put some dirt on the vault that contains his remains after it is lowered to the ground.

I'm going to share the Yeats and Blake poems on a handout. And because I never saw George distribute a single-sided handout or leave much empty space on a page, and I'm the same, I'm going to throw in three more poems that a friend shared with me this week. People can just have those.

These days have hurt in waves, as others probably know about grief. It's surprising to me and awful, but people help me a lot. Sam and Josh and Dan are doing a great job in talking to me and each other about George and their pain. Danny and Sarah went back to California on Wednesday after we saw Sam play in a baseball game. And the game couldn't have been better for him on his first time back in many weeks – Sam pitched three good innings and got a hit.

Some random dog person I know at the park told me the other day not to forget to smile. See these kids smiling the other day. It is happening, too. I'm sad, but I'm hopeful, and oh, so grateful for George in my life.

‘Show Up With Hope’: Anne Lamott’s Plan for Facing Adversity

https://www.nationalgeographic.com/magazine/2018/10/embark-essay-anne-lamott-hope-adversity-conflict-climate-change/
You would almost have to be nuts to be filled with hope in a world so rife with hunger, hatred, climate change, pollution, and pestilence, let alone the self-destructive or severely annoying behavior of certain people, both famous and just down the hall, none of whom we will name by name.
Yet I have boundless hope, most of the time. Hope is a sometimes cranky optimism, trust, and confidence that those I love will be OK—that they will come through, whatever life holds in store. Hope is the belief that no matter how dire things look or how long rescue or healing takes, modern science in tandem with people’s goodness and caring will boggle our minds, in the best way.
Hope is (for me) not usually the religious-looking fingers of light slanting through the clouds, or the lurid sunrise. It’s more a sturdy garment, like an old chamois shirt: a reminder that I’ve been here before, in circumstances just as frightening, and I came through, and will again. All I have to do is stay grounded in the truth.
Oh, that’s very nice, you may well respond. And what does that even mean, the truth?
I don’t presume to say what capital-T Truth is. But I do know my truth, and it’s this: Everyone I know, including me, has lived through devastating times at least twice, through seemingly unsurvivable loss. And yet we have come through because of the love of our closest people, the weird healing properties of time, random benevolence, and, of course, our dogs.
At regular intervals, life gets a little too real for my taste. The wider world seems full of bombers, polluters, threats of all kinds. My own small world suffers ruptures—a couple of deaths, a couple of breakups, a young adult who had me scared out of my wits for a couple of years—that leave me struggling to stay on my feet.
In these situations I usually have one of two responses: either that I am doomed or that I need to figure out whom to blame (and then correct their behavior). But neither of these is true. The truth is that—through the workings of love, science, community, time, and what I dare to call grace—some elemental shift will occur and we will find we are semi-OK again. And even semi-OK can be a miracle.
“Sometimes I have to believe that heaven is just a new pair of glasses.” That was said by a priest who helped establish Alcoholics Anonymous roughly 80 years ago—and when I remember to put on such glasses, I spy reasons for hope on every street. You can’t walk a block without seeing recycling bins. Nations are pledging serious action on climate change. My young friend Olivia, who has cystic fibrosis, got into a clinical trial two years ago for a newfangled drug—and it’s working, meaning she will live a great deal longer than we ever dared to hope.
I like these days in spite of our collective fears and grief. I love antibiotics. I’m crazy about electricity. I get to fly on jet airplanes! And in the face of increased climate-related catastrophes—after I pass through the conviction that we are doomed, that these are End Times—I remember what Mister Rogers’s mother said: In times of disaster we look to the helpers.
Look to the volunteers and aid organizations clearing away the rubble, giving children vaccines; to planes and trains and ships bringing food to the starving. Look at Desmond Tutu and Malala Yousafzai, Bill Gates and the student activists of Parkland, Florida; anyone committed to public health, teachers, and all those aging-hippie folk singer types who galvanized the early work of decontaminating the Hudson River.
You could say that river cleanup was child’s play compared with the melting of the ice caps—and I would thank you for sharing and get back to doing what is possible. Those who say it can’t be done should get out of the way of those who are doing it.
We take the action—soup kitchens, creek restoration, mentoring—and then the insight follows: that by showing up with hope to help others, I’m guaranteed that hope is present. Then my own hope increases. By creating hope for others, I end up awash in the stuff.
We create goodness in the world, and that gives us hope. We plant bulbs in the cold, stony dirt of winter and our aging arthritic fingers get nicked, but we just do it, and a couple of months later life blooms—as daffodils, paperwhites, tulips.
Hope is sometimes a decision that we won’t bog down in analysis paralysis. We show up in waders or with checkbooks. We send money to India, and the Sierra Club, the Union of Concerned Scientists, and to Uncle Ed’s GoFundMe account for his surgery.
You want hope? In India you see families waking up on hard, dusty streets and the poorest moms combing their kids’ hair for school. School is hope. Closer to home you see a teenager recover from a massive brain bleed and head off to a college for kids with special needs—not only alive but carrying a backpack full of books and supplies, and lunch. (Lunch gives me hope.)
You saw someone, maybe yourself or your child, get and stay sober. You read that the number of mountain gorillas in central Africa has risen consistently over the past few years. One had barely dared to hope, and yet? If this keeps up, we’ll be up to our necks in mountain gorillas.
We might hope that this or that will happen, and be disappointed—but when we instead have hope in the resilience and power of the human spirit, in innovation, laughter, and nature, we won’t be.
I wish I had a magic wand and could make people in power believe in climate science, but I don’t. I do, however, have good shoes in which to march for science and sanity. (Sanity: Is that so much to hope for? Never!) I see people rising up to their highest, most generous potential in every direction in which I remember to look, when I remember to look up and around and not at my aching feet.
My friend Olivia hates having cystic fibrosis, and every moment of life is a little harder than it is for people without the disease. But most of the time she’s the happiest person I’m going to see on any given day. She is either in gratitude or in the recording studio, where she is recording her second album of songs she wrote and plays on guitar. The engineer hits the mute button when she needs to cough, which is fairly frequently. She got a terrifying diagnosis 23 years ago, but with her community’s support, she and her parents kept hoping that she would somehow be OK or at least OK-ish—and then voilà, the successful clinical trial of a miracle drug.
Children pour out of school labs equipped with the science and passion to help restore estuaries and watersheds. Church groups pitch in to build water wells to nourish developing-world villages. As John Lennon said, “Everything will be OK in the end. If it’s not OK, it’s not the end.” This has always been true before; we can decide to hope that it will be again.
Sometimes hope is a radical act, sometimes a quietly merciful response, sometimes a second wind, or just an increased awareness of goodness and beauty. Maybe you didn’t get what you prayed for, but what you got instead was waking to the momentousness of life, the power of loving hearts. You hope to wake up in time to see the dawn, the first light, a Technicolor sunrise, but the early morning instead is cloudy with mist. Still, as you linger, the ridge stands majestically black against a milky sky. And if you pay attention, you’ll see the setting of the moon that illumined us all as we slept. And you see a new day dawn.
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