April 3: Peggy’s April Fool’s Day Surgery

 

Peggy’s April Fool’s Day surgery (percutaneous ablation with internal fixation of right acetabulum) came 47-days after her Friday 13th surgery. We had to check-in at the hospital, which is an hour’s drive north of here, at 6:00 a.m., which is five hours earlier than we usually get out of bed. In order to mitigate our fatigue, we spent the night before surgery at the Mario Pastega House, which is affiliated with the Episcopal Church and is for the use of Samaritan Hospital patients and their families.

The surgery involved removing a walnut-sized tumor from a bone in her hip called the ilium, and then securing the bone with glue and screws. Three hours after she awakened, three male physical therapists in their twenties came to test her movement and to give her advice on how to move while she heals. As they helped her walk to the bathroom, she peed on herself (she blamed it on a nerve block), so it was a good thing she isn’t shy. In fact, Peggy is so not-shy that, after showing them the incisions on her hip, she shocked one of her therapists by baring her abdomen so he could see the scars from her February surgery: “Why are you showing me this?” he asked, and I explained that she was proud of her belly because the three big scars were put there by a grenade that exploded when the Vietcong overran the field hospital at which she was a nurse, and she had to protect her patients with an M60 machine gun (a more likely explanation was that she was loaded to the gills with morphine).

Peggy’s ability to walk increased so rapidly after getting home from surgery that she soon traded her walker for rubber-tipped trekking poles. By the next morning, she had abandoned those also and was moving about the house with the aid of walls, chairs, and tables. She is now two days out from surgery, and is exhausted, in pain, and limps badly.


The CA-19-9 blood test measures pancreatic cancer. A healthy person’s level is zero to 37. Before starting chemo last June, Peggy’s level hit 2,550. Thanks to chemo, the number dropped into the 600s, but rose to 1,100 in December when the chemo stopped working. After her spleen and lower pancreas were removed on February 13, it was hoped that her CA-19-9 level would drop again, but it instead hit 4,480 on February 23 and to 6,340 on March 23. This could mean that the tumor in her hip (which had been treated with radiation) is active again, and/or that the cancer from her pancreas has spread to an additional location. When she told Marc (her primary oncologist) that the pain in her hip had returned, he concluded that the former was true, and put her on a new chemo regimen. He also ordered a “minimal residual disease” test called the Signatara that can locate tumors by finding—and tracing the origin of—even a small number of malignant cells that appear in the bloodstream. She will have her next CA-19-9 test on Monday, April 6, with the results being available on Tuesday. We’re hoping that her March 23, Signatara results will also be available next week.

Marc was unaware that the excision of the tumor on her ilium was even possible, and because he was out of town, she couldn’t talk with him during the interval between me finding a doctor who could perform the surgery and her having the surgery done. Fortunately, Nick, her surgeon, was able to get Marc’s consent before Peggy and I left Nick’s building last month. Had Marc objected, Nick would have cancelled the surgery were he like her previous surgeon (the one who did last year’s bone biopsy and port installation, and this year’s pancreatectomy) who said he wouldn’t make a move without Marc’s consent. After all, his livelihood is partially dependent upon Marc’s referrals, and while patients come and go, relationships between oncologists can last for years.

When Peggy sees Marc on Tuesday, he will no doubt put her back on some form of chemotherapy because it is possible that those new spots on her lungs are malignant and/or that malignant cells have landed in other parts of her body. Only 3% of stage four pancreatic cancer patients are alive five years after diagnosis, but I don’t know how celebratory they feel. If Peggy believed that she could only prolong her existence by feeling as scared, grief-stricken, and altogether miserable as she has felt this past year, I don’t know what she would do. 

If I were to compare her reaction to pancreatic cancer to that of an imaginary average patient, I would say that she has done very well indeed. Perhaps her worst moment came upon receiving her diagnosis, but another bad moment came while she was in the hospital following her first surgery, and became so overwhelmed with fear and grief that she asked for a therapy dog. An hour later, she was crying into the fur of a miniature black pug named Wiley whose life is devoted to providing counsel to sick people, frightened airline passengers, and youthful criminals—he later unwinds by running agility courses with Ina, his adopted mother. I don’t know what emotional cost dogs like Wiley pay, but he did his job so admirably that Peggy taped his photo to our bathroom mirror. We humans might have our place, but dogs and cats offer a degree of acceptance that we are unable to seek from one another.

Peggy often thanks me for all that I do for her, and I respond that my life would be meaningless without her trust and reliance. I’ve surely accompanied her to over 100 medical appointments during the past ten months. I missed one office visit because I had a medical appointment that day, and I missed five radiation appointments because she said that I wasn’t needed. I also attempted to beg out of taking her to the hospital for her latest surgery. My hope was that she would spend the previous night with Ilse—a friend who lives near the hospital and is like a sister to Peggy—who would drive her to the hospital the next morning and comfort her until she was taken to the O.R. for the three hour surgery. I would then drive up from Eugene and arrive while Peggy was still in recovery. I hadn’t even finished talking before Peggy objected so strenuously that I didn’t say another word. We sometimes talk about the fact that, should she die, I will have no one to care for me as I am caring for her, nor will I have someone who entrusts me to make medical decisions for her as she would make them for herself.

In caring for Peggy, I am observant and intuitive, but I’m also moody and tend toward depression. There are days when I’m gregarious, and there are days when it pains me to talk to anyone. For three months or more, I’ve also been having a problem with my left heel, which hurts so much at times that I limp (today, both of us are limping). The pain is like that of stepping on a nail, and despite wearing two to four inserts at a time (the number depends upon which shoes I have on), the problem has gotten worse. I’m to see a podiatrist in three weeks. My foot pain is made all the more burdensome by the fact that Peggy has but little strength and energy. No matter, though, things are as they are, and they could be worse. I often tell myself that I won’t be able to bear it if even one more thing goes wrong, but then it does.

March 20, Our Day Started Stupid

As I mentioned, our day started stupid. All of Peggy’s doctors except her new one are in Eugene, and we had driven ten miles up I-5 before realizing that we had left her new doctor’s address on the kitchen table. Upon googling him, Peggy found that his office is next door to the hospital in Albany. I had thought that he was next door to the hospital in Corvallis, but what could I do but trust the internet? Minutes after exiting the Interstate in Albany, we got lost. What with roadwork, the absence of a paper map, and Peggy’s iPhone (I don’t even have a phone) not being set up to give us directions, it took us quite a while to find the right address. Fortunately, we were on time. Nick’s name not being visible outdoors, I went indoors to inquire. 

The three people at the front desk did their best to understand what I was trying to say but because I have a speech impediment that makes talking difficult before late morning, I had to write the name Nicholas Tedesco on a post-it note. They had never heard of him, but upon looking him up, one member of the trio said that I was at the wrong town and hospital. While I drove to Corvallis, Peggy tearfully called Nick’s office to say that we would be an hour late. Fearful that the voice on the other end of the conversation would cancel her appointment, Peggy began to cry as she said, “I have to see him today.” The clinic’s operator then helped us to get there by giving detailed directions through fifteen miles of roadwork and redlights.

Hip pain was what initially drove Peggy to her internist in February, 2025. Four months later came the dreaded diagnosis, and although five rounds of radiation quieted the tumor, the pain returned when her chemo regimen failed in early January. Despite Marc’s assurance (Marc is her oncologist) that the tumor on her ilium is too big to remove, I asked Peggy to see a surgeon who specializes in bone malignancies. My suggestion wasn’t based upon the thought that Marc was wrong, but rather my hope that an oncological orthopedic surgeon could protect the hip from developing what we were told would be an inoperable fracture. Although she worried that Marc’s feelings would be hurt, Peggy finally agreed to see Nick.

Two weeks ago, Peggy started on a new chemo regimen about which Marc made the strange statement, “It gives me no pleasure to do this to you.” The first two post-treatment days weren’t bad, but as the drugs continued to flow into her body from the pump around her waist, she ended up moaning in bed for much of the following week. Her entire body hurt; she was too nauseated to eat; her right hand trembled; and she couldn’t stop shivering. Yet Marc had only started her at 80% of a full dose, and the side effects of chemo worsen with every additional treatment. I seriously wondered if she could bear even one more treatment, and my own prospects for holding up to her suffering weren’t looking good either.

Nick offered three options. The first—continuing chemo—fell on deaf ears because of her reaction to the one she’s on and Marc’s apparent lack of other options. Nick’s remaining suggestions consisted of either a small surgery or a big surgery. The small surgery could be done in three hours on an outpatient basis, and would involve placing three hollow screws in the upper bone of her right hip, ablating the tumor, and filling the area with cement. If successful, this would stabilize the bone and remove the metastasis (only time would tell if it had been entirely removed). If unsuccessful, Peggy might be unable to walk and would have to undergo the big surgery to regain function. 

Another option would be to have the big surgery instead of the small surgery. This would mean the replacement of both the upper and the lower bones of her right hip (in most hip replacements, only the lower part of the joint is removed). This would get rid of the cancer in her hip, but healing would require many months, and the worrisome spots on her lungs would remain untouched along with the possibility that cancer had spread to other parts of her body. Either surgery would require that she stop chemo immediately, and this could allow the cancer to spread. Peggy followed Nick’s advice and chose to have the small surgery, which will be done on April 1.

March 16, Falling Into Walls

 

Last night, Peggy fell into walls and doors when she awakened to use the bathroom. She didn’t call for help; she instead tried to fall quietly so she wouldn’t awaken me. So it is that we each try to protect the other, but last night was a bad time for her to do so. Side effects from chemo can develop even after chemo is stopped and have been known to become permanent. Peggy and I agree that death would be preferable to taking another dose of the poison she took two weeks ago. I would even fear for her life if she tried to endure it, so I can but be grateful that surgery offers another option.

It is now late afternoon, and she remains dizzy; can’t stop trembling; needs help walking; has vomited coffee-colored liquid; is too sick and exhausted to stay out of bed; and has only eaten a quarter serving of fruit all day. She has a phone number that her oncologist ordered her to call about such problems, but she refuses to call, partly because she is scheduled to have an infusion to strengthen her bones on Tuesday in preparation for surgery, and she’s afraid that her oncologist will cancel it if he knows how sick she is. I have her medical power of attorney, so I could call on her behalf, but the situation isn’t so bad that I feel that I must, plus I share her concern about the infusion. 

Both of us felt like idiots when we arrived at her new doctor’s office an hour late. When she called to tell her doctor that we would be late, the woman she spoke with couldn’t have been nicer. Anytime one calls a doctor in America, the person who answers the phone asks for full name and birthdate, so the woman probably surmised that age had made Peggy and me rather stupid. This is a common assumption, but the fact is that illness (I have my own problems that I haven’t mentioned), stress, and medications (I take narcotics and combine various types of sleeping pills) is a far greater challenge to our intelligence than age.

I concluded from our difficulty in finding the doctor’s office that I had failed Peggy. After all, she is the one who has cancer and is sick from chemo, so I should have known how to get there ahead of time. In my defense is the fact that my thoughts move as if in slow motion, and the nightmare that has become our normality has lessened my ability to comprehend and concentrate. Even so, I failed her repeatedly by not taking the time to double check that we had the proper paperwork; by not knowing how to get there in advance; and by not pulling to the side of the highway to look the address up for myself when what Peggy told me didn’t sound right. 

While it is true that Peggy is more intelligent than I in many ways, it is also true that she is sick from cancer; is being poisoned by chemo; and has never been good with maps or computers—including I-Phones. I love maps, and I’m good enough with computers that I haven’t needed technical guidance since the Dos-prompt days. Earlier today, she and I programmed her phone to give verbal navigation instructions, a job that took under five minutes. She had horrified me by seriously proposing that she ask a friend’s grandson to do it for her, so I don’t know if she would have undertaken the job without my help, although she could have easily done it.

My inability to verbalize her new doctor’s name so that the women at the first clinic could understand what I was saying added to the feeling of inadequacy that a poor speaking ability has plagued me with since childhood when I stuttered and couldn’t pronounce my own name because three of the six letters in Lowell is a letter than I couldn’t say. Then, five years ago, I was diagnosed with a condition called spasmodic dysphonia, which is worse in the morning. I had so much trouble in that clinic that I couldn’t even understandably spell the word I was trying to say. 

I later envied Peggy’s new surgeon because he spoke and moved with a self-confidence that I experienced in early and mid adulthood, but began to lose with age. Then, ten months ago, came Peggy’s illness, and the bottom has been falling out of my—and her—intelligence ever since. As my brother said, “We all draw the short straw at some point.” 

People sometimes tell us that we’re brave. I don’t know how Peggy feels about hearing this, but I don’t feel brave; I feel like a rat who is running frantically through a maze that has no exit.

A little history followed by where we are today...

Eleven months ago, Peggy complained to her internist of pain in her right thigh. He first thought that she needed a hip replacement. Her friend Walt, who ended his life three years ago because of cancer, had taken the same path with another doctor, but in his case, he went through with a hip replacement. By late May when Peggy’s problem was diagnosed as stage four pancreatic cancer, I was having to lift her leg so she could get into cars. Several rounds of radiation drove the cancer in her hip into remission.

Marc, her oncologist, decided in December that she had a chance of greatly prolonging her life by having her spleen and lower pancreas removed and hoping that the cancer on her hip remained inactive. 

Unfortunately, two of the six lymph nodes that the surgeon removed came back malignant following her February 13th surgery. Marc concluded from this that the cancer might have spread. Ten days later a post-surgical blood test called the CA-19-9 confirmed that the cancer had spread. To discover the location, Marc ordered her second CAT-Scan in three months. 

The radiologist wrote that the tumor in her hip hadn’t grown, and he saw no evidence of tumors elsewhere, with the exception of some spots on her lungs that weren’t there in December. However, when Peggy told Marc that she was again experiencing pain and loss of function in her right leg, he concluded that what he had thought was a new tumor was probably a resurgence of the cancer in her hip. 

Because her previous chemo regimen had stopped working prior to surgery, Marc ordered a new regimen which she will begin on Tuesday. It will take four hours to get the drugs started, and she will spend another 46 hours receiving additional chemo at home. This chemo is so body-wrecking that it could prove unbearable, in which case Peggy will receive palliative care only. 

As the cancer on her hip grows—as it is predicted to do at some point even if she tolerates the chemo—her hip could break, and breaks in cancerous bones are irreparable. This would be especially devastating to someone like Peggy who walks six hours a week. When Marc said that the hip tumor is too large to be removed, I asked that Peggy get a second opinion from an orthopedic oncological surgeon. She initially demurred for fear that Marc would interpret it as a lack of confidence in him, but later agreed that a second opinion was a good idea. Kirk, our internist, concurred and complimented us on our choice of surgeons.

Less than a month ago, we were flying high in the belief that she would live indefinitely, so to drop this far this fast has pushed me, at least, to what I fear might be the edge of sanity. Peggy cautions against allowing cancer to define our lives, yet I’m finding it ever harder to rebound.

Fear of Peggy’s weakened immune system succumbing to an infection had kept us in isolation until last week when we entertained some longtime friends. Then, this week, an Episcopal priest named Ryan brought communion and visited for nearly three hours. Ryan voluntarily wore a mask except when he took it off for a moment to drink or pose for a photo.

My college friend, Lynn, might be the only person in my life who has experienced what I am going through, and his wife, Christi, might be the only person who understands what Peggy is experiencing. Several years ago, Christi was diagnosed with an aggressive brain cancer called glioblastoma. Her M.D. Anderson oncologist said there was only one treatment, and while it drove Christi’s cancer into remission, it nearly killed her, and it left her immune system so compromised that she and Lynn live in the same virtual isolation that Peggy and I are experiencing. Lynn and Christi believe that the prayers of their family and fellow Christians saved Christi.

Although I don’t believe in personal prayer, I have experienced the sacred through the Episcopal Church since I was an 18-year old convert from the fundamentalist Church of Christ. The Eucharist; the ancient hymns; the Book of Common Prayer; the glow of stained-glass; my congregation’s hand-carved altar, and, most of all, the coming together of diverse peoples to love God as they understand God, and to give the support to one another that their love of God requires, are all precious to me. 

I also experience the sacred through Peggy and in art, nature, books, cats, compassion, poetry, integrity, and many other things, both natural and human-made. I see the sacred in my friend, Tom, who, when I asked him to bring me two things from the grocery store, brought two bags that were overflowing with cake, cookies, flowers, and groceries—for which, Tom being Tom—he refused reimbursement. I also experience the sacred through your kind responses to my posts and letters; through the visits Peggy and I make to nearby Mt. Pisgah (see coyote); through the affection and acceptance of priests who know of my non-belief and are sensitive to my struggle; through memories of my online visits with Anna, Louise, and David, who are also friends from church; and through many other things. 

 

Peggy’s illness has caused her beauty to ripen. I have always been proud to be seen with her, but never so much as today because she was never so beautiful as she is now. She told Jackie and Kurt that she no longer has the strength of a warrior in her fight against cancer, yet as I write these words, she is doing her thrice-weekly dumbbell workout. She and I agree that she is facing this ordeal better than I, although she is the one who has cancer. Unlike myself, Peggy is a private person, but because cancer has made it impossible for her to keep her pain and her heartbreak to herself, the intimacy of our relationship is greater than ever, both of us feeling fully naked and fully helpless at times. I admire her for being braver than I, but this makes me no less accepting of those occasions when she is unable to cope. My purpose in life is to support Peggy, no matter how severely her cancer wrecks her body. What, then, will be left to me if my reason for living is destroyed by her death? 

“You become. It takes a long time… Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.” —from The Velveteen Rabbit

The Worst News Yet

On February 13th, Peggy’s spleen, lower pancreas, and two lymph nodes were removed in the hope that she could return to a nearly normal life. She has been moaning in pain since the surgery but refuses to take narcotics. 

When we saw Marc, Peggy’s oncologist, on Thursday, February 26th, we knew from the moment he walked into the room that the news was bad.

Marc said that Peggy’s post-surgical blood tests indicated that her cancer had spread, but that he didn’t know to where. I am writing this on Monday, March 2, and she is to have a CAT-Scan with contrast later today. If nothing shows-up, he will order both a PET-Scan and a blood test for micro cancers. He also wants to start her on a new chemo, one that might extend her life by two months but is likely to cause illness or unbearable side-effects. Peggy has thus far expressed opposition to this chemo. 

Coming as it did right when we were confident that the surgery would prolong her life, Marc’s bad news—and the unrelievedly grim way he presented it—knocked our legs from under us. 

Peggy and I are ever grateful for the generosity of those who have called, phoned, texted, sent cards, and ordered gifts. During the past week alone, she received six cards and a bouquet. Also, one friend cooked us a meal; another friend ordered a meal delivered; and still another gave her what Peggy identified as a hundred dollar clothing button. In terms of numbers, the majority of our support has come from Peggy’s friends in the button collecting community, but we’re also well-supported by members of her family and by Lynn and Christi, a married couple that we met in college. Then there are my two Episcopal priests and other members of the Episcopal Church I attend. I must also give credit to my blog buddies, my two siblings (a third sibling died in February) and the members of my online support group. Our most distant supporters are Michelle in England and Kylie in Australia, and our nearest ones are Kevin and Sarah who live next door. 

People have offered to sit with Peggy, take her to appointments, do our shopping, and travel from a distance to help us in our home. My church friend, Tom, has often expressed frustration that I won't allow him to “do things” for us, but there could be no more precious gift than his willingness to listen to my feelings and to, on one occasion, hold me when I cried. Ironically, my only bad experience in turning to others for support came within days of Peggy's May diagnosis when two members of her family accused me of being a weakling when I asked them to be there for me while I developed the strength to be there for Peggy. Of all the people in the world, they were the ones whose support I felt the surest of, yet one of the two accused me of throwing a “pity party,” while the other said, “Get over yourself.” Peggy told me today that their attack has been the hardest thing to bear of all the hard things that she has had been through, and I can say the same. 

I think it likely that many people feel as they did. I also believe that, to such people, manly strength is well-represented by the false Stoicism of Peggy’s father who, when asked if he’s okay, will say, “I’m fine” through teeth clenched with back pain. Such a man stays hidden behind a drawbridge, and when he dies, it will be without anyone having known him. Perhaps, I go too far in the other direction, but what I speak is the truth as I see it; I speak it unashamedly, and I am okay with people rejecting me for it unless I trusted them awfully, awfully much. 

I try to hold to the thought that the two of whom I speak are but two people out of the more than a hundred who have showered us with abundant goodness.

As I was finishing this, Peggy returned home from her CAT-Scan faint, nauseated, and trembling. As bad as that sounds, it was an improvement over how she felt the last time she drank contrast. Until today, I had accompanied her to every chemo, every procedure, and every doctors’ appointment that she has had (out of an estimated two per week), but because I had an online doctor’s appointment today, Shirley, the first friend we made when we moved to Eugene in 1986, took her. Thank you Shirley. Thank you all.

We Receive Sad News

 

I started the following in answer to Ellen’s question following my last post, but decided to make it into a post. The first photo was taken during such a surgery. The second photo is of the type robot that is used. The third photo shows the medical staff’s positioning.

When Peggy’s surgeon, Diego, called me after her surgery on Friday, he pronounced the removal of her spleen, lower pancreas, and six lymph nodes (for biopsy), a success. During the following days, I reminded myself repeatedly to check on her biopsy results, but was so confident that they were negative that I still hadn’t done so when I went to bring her home from the hospital on Tuesday. Upon reaching her room, I found Peggy despondent, and when I asked her why, she said that two of the six lymph nodes were malignant.

On the drive home, she said that the worst part of learning her biopsy results was having to tell me. She then asked that I keep the malignancy a secret because, “I don’t want people to know I have failed and to treat me with pity.” I could but say that even brave and intelligent warriors lose battles, and that she is the only person on earth who would judge herself a failure.

On Wednesday, Peggy told her older sister, Dianne (who is certain to tell the rest of their family), about the biopsy, so I no longer knew what she expected of me. When she told someone else today (Thursday), I asked if she still wanted me to keep the news a secret, and she said, “I guess not.” I could hardly interpret her response—“I guess not”—as a ringing endorsement to tell who I pleased, but because they are going to find out anyway, I had rather they get the news directly (from Peggy or me). I also don’t want anyone to feel bad that they weren’t told sooner because I have been in that boat, and it hurts.

I’m in an online support group with a very nice lady who was married to a terminally ill woman who didn’t want anyone to know she was terminally ill. By reluctantly agreeing to conceal this information from friends and family, the ”nice lady” and her spouse lost 100% of the support they would have received, and now that the ailing spouse is dead, the survivor is struggling to forgive her for making so hurtful a demand. 

Peggy sees her internist tomorrow (the 20th), her surgical oncologist on Monday, and her chief oncologist on Thursday. Each appointment will be awaited with what have become the dominant emotions of our lives, hope and dread. Meanwhile, Peggy is despondent for having, “...put my body through a horrible surgery for nothing.” I can but hope that her doctors have something good to say.

A Post-Surgical Update

The bicycling photo of my sister, Carol Gay, dates from 1969, when she was fourteen. In case you missed my last post or two, I’ll mention that Gay died on Friday. She was 71.

Peggy’s doctor failed to order the patient controlled narcotic pump he promised, so her pain level was six and rising when I reached the hospital at 7:00 p.m. Friday. While walking the stairs to the seventh floor, I got the call that my sister, Gay, had died, but didn’t answer it.

Peggy is not one to cry wolf, but Sophie, her busy and distracted nurse, had to be reminded repeatedly to call Peggy’s doctor, and even then we couldn’t be sure that she had done so because she was nowhere to be found. By 8:00 o’clock, Peggy’s post-surgical anesthetic had worn off, and she was crying and moaning. I called Peggy’s doctor myself, but his answering service wouldn’t put me through because, “Your wife’s nurses are supposed to control her pain, and if they can’t, it’s their responsibility to call her doctor.”

Peggy then demanded to see a hospitalist (a doctor on staff at the hospital), but was told that her surgeon hadn’t okayed it. Twenty minutes later, Sophie brought her two oxycodone tablets which Peggy refused to take, saying that they weren’t nearly enough; that her nasogastric tube made it impossible to swallow; and that she’s 74-years-old and has trouble swallowing pills on her best days. When Sophie offered to turn her tube off and kept urging her to “give the pills a chance,” Peggy asked to speak to the unit’s charge nurse. A half hour later, Sophie injected morphine into Peggy’s IV, and her pain level slowly dropped to 3.5. At 9:00 o’clock, Melissa, the charge nurse, came by to say that Peggy’s doctor-on-call had ordered a Dilaudid-powered pain pump and had authorized an IV injection of Dilaudid to tide her over until the pump was installed (Dilaudid is many times stronger than morphine).

I’ve spoken to Peggy twice today, but won’t visit her until tomorrow unless some new calamity arises. Although I spent much of today sleeping, I’m as tired now as when I went to bed last night. I am also finding it ever harder to power my way through situations that I can’t do much to remedy. Peggy told Melissa that she didn’t blame Sophie for the fact that she had spent two hours in horrific pain, but I mostly remember Sophie repeatedly saying “I’ll be back in just a minute,” before disappearing down long and empty corridors for twenty minutes at a time as Peggy’s pain worsened. Assaults on healthcare providers are a growing problem in America, and I had fleeting fantasies of running amuck myself because of Sophie’s emotional detachment. God help anyone who trusts her caregivers to stay on top of things.

Since coming home, I’ve bounced between obsessing both over Gay’s death and the world’s suffering, especially the suffering of animals in vet clinics who can’t tell their providers how much they hurt, and of wild animals who have no providers. During America’s Civil War, the Union blockade made it impossible for the South to import morphine with which to ease the pain of wounded soldiers (among them my relatives), and then there were the thousands of wars that were fought before morphine even existed. Peggy suffered increasing agony for two hours, yet I never lost faith in the thought that, if we persisted, she would eventually receive the help she needed even if I had to knock on doctors’ doors at midnight, but what if she had been in Gaza? What happens when the unbearable must be borne? Where is the justice? Where is the mercy? Even if a case could be made that our sorry species—from infancy on—deserves to suffer, how does this justify the suffering of dogs, cats, and polar bears? People who are more religious than myself have much to explain.

The photo to the left was made of myself, my half-sister, Anne, my half-brother, Jim, and my sister, Gay, on the day of our Mother’s funeral in 1988. I’m leaving the arrangements for Gay’s funeral to our eighty-eight year old sister, Anne, although when she guessed Gay’s age for an obituary, she was off by twenty years. It’s easy to tell myself that I should be doing more for Anne—and for Peggy—but making myself follow-through seems impossible when I can’t seem to stay out of bed. Today, though, I feel better than I did yesterday, and I will stay out of bed.

It is now Sunday, and Peggy’s  throat had recovered enough from being intubated that she no longer talks like Gay, a 55-year smoker. I will now breakfast, shower, and pay her a visit.

 

Diego’s plans to send Peggy home today (Monday) had to be cancelled when her always low blood pressure suddenly went high, so now I have no idea when she can come home. For her part, she wants to stay in the hospital another night because she worries that the BP meds will drive her pressure so low that she will become dizzy.

Friday, 2:25 p.m. Pacific Time

This letter and the ones that follow are to the forty-one people whom either Peggy, or I, or both of us, want to tell about today’s surgery, and I will also post it to my blog. 

It’s now 10:30, and Peggy was taken to surgery a half-hour ago. Her 384-bed hospital was running behind because Peace Health Sacred Heart Hospital (Peace Health is a Catholic run chain that owns several Northwestern hospitals of which Sacred Heart is but one) laid-off 1% of its nursing staff this week (for the well-being of its patients, it claimed), and nurses are calling in sick to protest. 

Peggy started working as a nurse at Sacred Heart (as it was then called) in 1986, and retired 26 years later. Then, as now, nurses called their employer The Sacred Wallet. She became so disgusted with hospital management that she couldn’t wait to retire, and by the time she did, she had lost all respect for management’s honesty and goodwill. However, the hospital’s staff isn’t its management, and she is being treated very well by the people who matter.

Peggy has crummy veins, IV-wise, so she won’t tell her nurse that she too is a nurse until after he or she gets her IV started, because every time she has, she had to be stuck repeatedly. Today, her IV had to be installed in her elbow, so Jon, her anesthesiologist, promised to move it during surgery so she can bend her arm when she wakes up. 

Her five-hour surgery is called a Distal Pancreatectomy Splenectomy, and Jon said that, after that much anesthesia, she won’t remember a thing for the rest of the day. Her main concern about surgery involved her objection to the use of a robot, so she had previously asked Diego, her surgeon, if he really had to use one, and he explained that robots don’t have tremors. This failed to allay her fears

Neither of us could sleep last night, yet I have to be alert to take Diego’s call or calls, so I’ve been drinking cup after cup of coffee and taking some Ritalin that Peggy was prescribed for chemo-related fatigue but refuses to use. Oddly, given that she’s married to someone who has a casual attitude toward drugs and has been taking narcotics legally for 15-years, Peggy is very anti-drug. In fact, she tried to avoid being put to sleep for surgery, but was denied that option.

I envy Peggy her bravery. Of course, it could be that if I were in her position, I too would be brave. I don’t say this to minimize the tragedy of pancreatic cancer but to say that I had a thousand times over rather be the one who has it. I’m her husband, and I’m supposed to protect her, but I can’t, and that makes me miserable. However, I can be a lion in her defense, and I am too, so much so that she had to reign me in last summer when I became too aggressive in dealing with her caregivers.

It’s now 10:45, and I just got a text saying that the procedure had begun. I don’t know why they’re just now starting, but the delay must have been hard on Peggy who would have been lying on a hard table in a cold room. Warm patients have better surgical results, so I hope she has been demanding warm blankets.

Now comes the waiting and the hoping that Diego won’t call for another five hours because if he calls sooner, it will probably mean that when he blew her belly up with gas, he found that the cancer had spread to other organs in which case he will sew her up, and she and will be very, very sad.

Until her oncologist praised me for going to her every appointment, it hadn’t occurred to me that I could have stayed home, not that I would have because, since her diagnosis, our lives have become so intertwined that I have no life of my own. I eat, sleep, and breathe her cancer, and I’m hell’s own googler and doctor questioner when it comes to seeking information. My every thought is either of Peggy, or it will soon return to Peggy. I have her medical power of attorney. I have her advance directive. I call her doctors by their first names because they’re her employees, not her betters, and I’m as knowledgeable about her condition and treatment as age and misery will allow.

My 71-year-old sister, Gay, has smoked since her teens and done hard drugs since her twenties. Two weeks ago, she got so high on meth one bitterly cold Mississippi night that she visited her neighbors naked. I don’t know if the meth was to blame, but a short time later, she had a severe stroke and is now in a hospital room all by herself awaiting death. Gay’s dead husband’s brother and Gay’s obviously high housemate (neither of whom I had met) have been courteous and good about keeping me updated. The best case scenario is that Gay won’t linger because I’ve seen what awaits people who survive devastating strokes. I feel like I should stop writing to you and call her doctor because I am, after all, her nearest relative, but I’m at my limit at to what I can endure. I’m sorry, sister.

Peggy’s last words to me were, “I love you.” I’ve heard her say those words thousands of times, but never before had I wondered if I would hear them again. Even when she climbed high mountains on which deaths were frequent, I believed that she would be careful, that her companions were trustworthy, and that the odds were good that she would come down alive. Now, I don’t know what the odds are. I just know that fear and sadness have dominated our lives since May. 

Speaking of high mountains, after all she endured, she almost died on 762-foot Diamond Head in Hawaii because she climbed it on a hot day an hour after a dehydrating plane ride from Oregon. She got most of the way to the top before she collapsed from the heat and had to be airlifted to a hospital. That experience combined with what she later told me about the risks she and Walt, her primary climbing partner, took on high mountains convinced me that my confidence in her prudence and her companion had been misplaced. Summit fever is a sometimes fatal psychological problem that afflicts people who should turn back but don’t, and Peggy had it so bad on Diamond Head that strangers who watched her vomit stepped in to physically restrain her when she insisted upon continuing upwards.

I used to think that doctors had a special way of giving people bad news so that it wouldn’t seem bad beyond what they could endure, but they don’t. Her oncologist’s first words were, “It would be reasonable for you to choose palliative care only, in which case you will probably die in six to eight months.” That was nine months ago, and while the chemo has kept her alive, it has made her perpetually sick, tired, nauseated, and chemo-brained, plus it has made her food tasteless. Worse yet, chemo drugs invariably stop working, which is why only a tiny fraction of one percent of pancreatic cancer sufferers are alive five years after diagnosis. 

Today’s surgery was originally scheduled for January 27th, but because her doctor’s previous surgery took hours longer than expected, he rescheduled her surgery even as she lay in pre-surgery room number 13 after a day of fasting and bowel prep, plus getting out of bed hours early and enduring four IV sticks. Today, is Friday the 13th, and she was again assigned to room number 13. My friend, Bob, tells me that thirteen is considered a lucky number in some places just as black cats are considered lucky in the British Isles. One can but hope.

As most of you know, Peggy is well-known among American clothing button collectors, and she stayed up late last night putting together one last pre-surgery button card. My first childhood book was about a squirrel who so filled his house with nuts that he had no place left to eat, sleep, or sit, and damned if that book didn’t predict my marriage. You wouldn’t think that a woman could fill her house with something as small as buttons, but she’s on her way, so I can but celebrate the friends she has made and the joy she has found in these tiny works of love and artistry. In fact, her primary support during this ordeal has come from her fellow button collectors who (unlike a few relatives whom I had mistakenly imagined would constitute our primary support) continue to text, call, and send cards and gifts nine months after her diagnosis. I love you, dear button collectors, and I thank you with all my heart for your goodness to your friend, my wife. One never knows how much her life matters until such a fate as pancreatic cancer brings it to an abrupt halt and replaces it with a seemingly endless nightmare.

Still no news, and that is good because no news means that the cancer hasn't spread to nearby organs. 

I'll be in touch,
Lowell

An Update Regarding Peggy's Surgery

 

While reading the following, please bear in mind that I hold a power of attorney for Peggy's health care, and this enables me to receive any and all information about her care and to speak and act on her behalf, which, with her added verbal permission, I often do.

As my regular readers know, Peggy has stage four pancreatic cancer and, after months of chemotherapy, was scheduled to have a distal pancreatectomy/splenectomy (aka the removal of her spleen and lower pancreas) on January 27th. Because the cancer has spread to a bone in her hip called the ilium, she will have to undergo a second surgery to remove that tumor. Radiation treatments had initially driven the cancer in her hip into submission, but now that it is showing signs of becoming active again, speed matters, both to keep the cancer in her hip from becoming too big to remove, and to keep the pancreatic cancer from spreading beyond her hip. Last week, she learned that her surgeon's website had listed her January 27th surgery as a "robotic (XI) assisted laparoscopic pancreatectomy duodenostomy whipple." This threw us into something akin to a blind panic because we didn't know if her insurance would cover the last minute change to the correct surgery. Fortunately, insurance had already approved the correct surgery, and no one at her doctor's office seems to know why her doctors' website named an incorrect surgery. This brings us to this week... 

Peggy’s surgery was scheduled for 12:55 on January 27th. At 2:00 o’clock, a nurse manager named Laura Smith came to Peggy’s room and said that a prior surgery was taking hours longer than expected, and that Peggy’s surgery had been cancelled. As Peggy collapsed in tears, Laura asked that we call her if there was anything she could do; handed us a letter stating that the hospital “would like to express sincerely (sic) apologies for the cancellation of your surgery/procedure today:” and left the room without saying another word.

When we got home at 3:30, I called Laura to ask that she use whatever influence she has to get the surgery rescheduled as soon as possible. She said that Peggy’s surgeon, Diego Muilenburg, had already promised to do the surgery ASAP, by which he meant late this week or early next week. When I said that Diego’s “ASAP” in December had meant six weeks, and I was afraid that we might face another long delay, Laura repeated what she had already said. She did not seem pleased to hear from me.

Diego called yesterday evening at 6:30 and gave Peggy a tentative date of February 13th for her surgery and said that he wasn’t at all sure if he could do it then because he didn’t know if a robot would be available. I immediately wrote to Peggy’s oncologist, and asked if he could find her a surgeon who could operate sooner. His office called this morning and said he could not. Diego’s office also called this morning and confirmed the February 13th surgery date.

By this morning (January 28th), Peggy’s low mood had rebounded. It’s typical with us that she falls fast but recovers quickly, whereas I might appear to fall slower, but once I am down, I don’t soon get up. I work very hard and very well in many ways to support Peggy, but maintaining a buoyant mood is more than I can do. Because getting this surgery done before the cancer spreads further is Peggy’s only shot at life, I think it could have been done sooner than two months. Whatever the reason it wasn’t, I see no evidence that her surgeon places much importance upon her life. When he called her last night, she complained of having to go through the extensive pre-surgical preparation a second time. When she mentioned the fast and laxatives as among her complaints, he didn’t say he was sorry that she had to endure that. He instead said that not ordering something so completely unnecessary would be a learning lesson to his team.

Peggy is Cleared for Surgery

Peggy’s oncologist called on Sunday and again on Monday (I never stop marveling at that man’s dedication) to discuss her situation in some detail, but I’m going to cut to the chase by saying that Friday’s PET-Scan showed no new tumors.  This means that she is still on the schedule for a January 27th pancreatectomy, and, once that is done, for an excision of the malignancy on her ilium. In the best case scenario, this would leave her cancer-free, but no one is talking about what the odds are, although her primary oncologist has made it clear that he is subjecting her to a much more aggressive treatment than usual.

You might think that I would be jumping up and down with joy about now, but after months of unremitting tension, I’m so exhausted that I feel numb. Although our excellent news might bring me more relief than jubilance, I know that my misery would be boundless had the PET-Scan shown a new tumor.

I am sincerely grateful to all those who have emailed, sent gifts, brought food, come to visit, listened to our fears, offered to stay with us, held us when we cried, loaned us medical equipment, sent greeting cards, offered encouragement, and insisted that we come up with some way that they could help. Although I’m often too busy, too distracted, and too exhausted to show gratitude for this bounteous outreach, I am acutely aware of the fact that those who offer it are literally enabling us to survive a life-or-death ordeal. Perhaps there are people who can face such crises without the generous support of others, but I am not among them.

Peggy's Surgery

  

 

Two weeks ago, Peggy had a CAT-Scan, which showed that her pancreatic cancer remains confined to her pancreas and ilium. Based upon this result, Marc, her oncologist (see photo), recommended that she have the pancreatectomy which she had been pleading for since her May diagnosis. When Diego Muilenburg, her surgical oncologist, agreed to perform the surgery, Marc ordered a PET-Scan which can show tumors that the CAT-Scan missed.

We saw Diego for her pre-surgery appointment on our 54th anniversary. He can’t perform the surgery until January 27th, which is the earliest day that he, a robot, and an operating room, will all be available. I asked Kirk, our influential internist of 35-years, if he could arrange an earlier date, and he contacted a number of other surgeons but to no avail.

Marc was guardedly optimistic that the pancreatectomy will leave her cancer free except for the tumor on her hip, which is stable, but Diego thought it likely that tumors will continue to appear because of the malignant cells that are already in her bloodstream. Another concern is that her CA-19 (a pancreatic cancer marker) has doubled in six weeks, and this could indicate that her chemotherapy has stopped working. When I shared my fears with Kirk, he tried to reassure me. When that failed, he said that everyone has to die sooner or later, himself included. I considered his words stupid and callous until it occurred to me that he might be worried about his own health (he and I are both 76).

As I see it, the two hardest things about Peggy's illness are as follows: We’ve lived the past eight months in such unrelenting hope and dread regarding the outcome of the latest test, exam, or procedure, that we are finding it increasingly hard to function. For example, we’re frugal people with an environmental awareness that has always kept us from throwing away food, yet we are now composting food daily, partly because we shop in forgetfulness of what we already have. We are also having trouble cooking meals and getting chores done. I used to clean our entire house in a day. Now, it takes the two of us so many days that we’re lucky if we get the bi-weekly job done before it’s time to do it again. We also lose things; we make stupid mistakes; we are unable to follow conversations; and we forget things that were just said or done. These problems are worse for Peggy because of the chemo, but they're bad for me too. 

 

Sleeplessness is also a problem. At any hour of the night, there's a strong possibility that Peggy will be awake reading; and worry and back pain are keeping me awake despite taking up to three Unisom, the maximum dose of Ambien, and 4,800 mgs of Gabapentin. Our second worst problem is that every chemo is making her sicker for longer than the previous one. If the surgery doesn't work, she might very well choose death over chemo, and there's the possibility that she will die anyway.

At least we have good support; Peggy through local friends and through friends in the local, state, and national clothing button societies (one of whom offered to come from a distance to stay with her); and me through my blog, through a Diocese of Oregon online support group, through St. Mary’s Episcopal Church, and through friends and relatives with whom I correspond. Then there's the support that we both receive through our photographer friend, Teddie, who is documenting our long marriage. 

I doubt that anyone attends St. Mary’s more faithfully than I. The church’s two active priests and its retired priest have been generous with their time, and parishioners have given us gifts, among them two handmade "prayer shawls" and the loan of a coastal vacation cottage.  Still others have visited us at home or offered to cook for us, and I am proud to say that I have been entrusted with a key with which to perform my duties as a volunteer sexton. 

Of all who have stood beside us, few have been more committed than her oncologist, Marc who has called on several occasions, three of them on the same day. Last but not least, when it comes to support, are our four remaining cats (her favorite cat died a month after Peggy's diagnosis) who are able to bring fleeting smiles to our darkest hours.

After seeing Diego, we celebrated our anniversary by going out for breakfast and shopping at a charity-run store where Peggy bought a 1930s Shirley Temple novel and a knickknack with the word Rejoice on it. We also visited an animal rescue facility where we petted cats and Peggy was presented with a handmade Christmas ornament. Although our day was precious, horror that I might be alone on our next anniversary occasionally intruded. Until now, Peggy has been optimistic, and her optimism has kept me afloat, but Diego’s gloomy assessment combined with the rise in her CA-19 level has been devastating. It's possible that he won't operate on anyone between now and January 27th who is in such desperate need as she, and I'm angry that she could die because he can't, or won't, do it sooner. I can't help but wonder if she could get the surgery sooner if she were twenty-four rather than seventy-four, or if we contributed a million dollars to the hospital that employs him. 

Why Am I an Episcopalian?

Two events put me on the road to joining the Episcopal Church. The first occurred in 1967 when my girlfriend, Sherry, and I entered an unlocked Church of Christ that we had never visited because it disagreed with our own Church of Christ over how many “cups” to use in the weekly communion. We entered that church because I enjoyed seeing new churches and because it appeared to offer a quiet place to talk. Sadly, an angry man soon appeared, accused Sherry and me of “polluting the Lord’s House with lasciviousness,” and threatened to call the sheriff if we didn’t leave. 

A few weeks later, Sherry and I entered another empty church. It was an Episcopal Church, and I hadn’t seen anything so beautiful since attending a Catholic wedding at age six. Again, someone followed us in, only this time the new arrival was the church’s priest who welcomed us warmly and told us to stay as long as we liked. These two experiences epitomize the difference between churches obsessed with sin and churches that focus upon love.
 
I look forward to church all week. In my imagination, I watch myself enter the sanctuary; remove my hat; dip my finger in holy water; make the sign of the cross; walk to my accustomed pew; bow to the altar; kneel; make the sign of the cross a second time; silently recite the Gloria, the Sanctus, the 23rd Psalm, the Apostles’ Creed, or another recitation; and make the sign of the cross a third time. As the organ booms and the procession makes its way to the altar, I stand and bow to the passing cross. I am very happy.

Here are some of the scores of things that I love about the Episcopal Church: Liturgy; chanting; vestments; incense; confession; absolution; holy water; Paschal candles; participatory worship; holy oil; saints’ statues; kneeling rails; processional crosses; midnight masses; decorative altars; priestly blessings; seasonal colors; Holy Week; diverse beliefs; baptismal shells; ornate architecture; 33-bead rosaries; stained glass windows; the church calendar; the seven sacraments; the Book of Common Prayer; thousand year old music; marble baptismal fonts; palm crosses; ashes on my forehead; the consecration of the host; the blue sanctuary lamp; readings from the Bible and the Apocrypha; people who love the Episcopal Church as I do; words for the many objects employed in worship (e.g. stoup, thurible, aumbry, aspergillum, sanctus bells, and best of all, purificator); taking part in a beautifully written ancient ritual that unites a community of diverse people; the knowledge that this ritual is being repeated in Episcopal Churches all over the country, and, to a lesser extent, the worldwide Anglican Communion.

Despite my love for the Episcopal Church, I can no more assent to every catechismal claim than I can assent to every claim made by a political party, and so it is that when I recite the creeds, I’m not expressing agreement but affiliation. Few people demand that the words to every poem and the lyrics to every song have rational justification, nor is that the spirit in which I approach worship. As the voices of the congregation unite in chanting the 1,300 year old Gloria or the even older Sanctus, I sometimes reach for my bandana while reflecting that the people who love these things are the people among whom I belong, if I belong anywhere. The Episcopal Church provides me with an experience of beauty and worship unrelated to rationality. For me, the meaning of worship is to be found everyplace but a dictionary.

I am a Christian by culture and heredity. I have ancestors who were clergymen. A Cumberland Presbyterian minister on my mother’s side owned slaves, and an Episcopal ancestor on my father’s side built a chapel that still stands on his Virginia plantation. I now wish to enlarge upon some things I said in my last post... The people of my childhood believed that I too would preach, but doubts about God’s goodness—and later his existence—which started at age eleven only deepened. Yet, I continued to seek God through college courses in Bible and theology. I also sought God through hallucinogenics and by visiting over fifty Christian denominations, a Bahai temple, a Buddhist temple, a Quaker Meeting, two Jewish denominations, a Self-Realization Fellowship, a Hare Krishna farming commune, the massive Hare Krishna temple in West Virginia, and probably others. I accumulated religious institutions like movie cowboys accumulate notches on their six shooters, but never did I consider joining a non-Christian religion because, with the exception of an 18th century African grandmother, Christianity has been my heritage for the better part of 2,000 thousand years.

The Episcopal Church prides itself on an inclusivity that extends beyond external differences like race and income to include internal differences like disagreements over Scripture. The question then becomes where to draw the line? Would it not be hypocritical for the church to say, “We’re fine with you not believing in eternal hell, literal angels, the virgin birth, Christ’s miracles, and a blood atonement,  but if you want to worship with us, you must believe in the supernatural, although we can’t tell you what that means or prove to you that it exists.” Such a requirement would reduce the supernatural to a mere password that neither the church’s most prominent bishop of recent years, John Spong, nor its most prominent theologian, Marcus Borg, could in good conscience embrace. 

Over the years, I’ve told four Episcopal priests at two churches that I wanted to attend their church but that I saw no reason to believe in the supernatural. Three of the four said I was welcome to to participate fully regardless; one of them explaining his approval by saying that I wouldn’t want to come if God didn’t want me to be there. As seen from the inside, my desire to attend is so strong that it truly is reminiscent of the behavior of metal in the presence of a magnet. Of course, I would explain this by saying that my life goes better when I worship, and church is among the places that best elicits such a response.

I have been strongly drawn to the Episcopal Church for 58-years, yet I have for the most part struggled against that desire, and it takes but little rejection on the part of churchgoers for me to stay home. The fourth priest was the first in whom I confided. Ted was his name (this was in 2012), and he was rector at St. Mary’s, my current church. After I had attended faithfully for months, he encouraged me to come in for a talk. As we spoke, I told him about my beliefs, and he suggested that I didn’t belong at St. Mary’s. On another occasion, a member in whom I confided said, “Given that you don’t believe in God, I don’t know why you’re here.” I attended another Episcopal Church for awhile, but my heart was at St. Mary’s, so when Ted retired after 29-years at St. Mary’s, I returned with the approval of the new priest, Bingham (Ted still lived nearby, but was housebound because his wife was ill).

However, I eventually fell prey to cognitive dissonance from aligning myself with an institution that, in my view, is founded upon mythology. After attending for the better part of a year, I left a second time. That was three years ago. Last winter, I found myself wanting to return but hesitated because of my poor track record. When Peggy received her cancer diagnosis in late May, I knew I wouldn’t survive her death without strong support, and that meant church. I now have two Episcopal friends (Tom and Bob) who have promised to support me should Peggy die, plus I attend an online support group through the Episcopal Diocese of Oregon. Cognitive dissonance no longer seems important.

After Ted’s wife died last year, he started attending church regularly. I wanted to make peace with him, but when he gave no indication of remembering me, I decided against talking to him about the past. However, I very much longed for reconciliation because Ted is more than one parishioner among many; his popularity is such that St. Mary’s named its dining room after him. More importantly, I wanted reconciliation for both our sakes. I quote from Matthew 5: 23-24:

“If you are offering your gift at the altar and there remember that your brother has something against you, leave your gift and go. First be reconciled to your brother, and then come and offer your gift.”

During the weekly “Passing of the Peace,” people walk about shaking hands and wishing one another peace. Two Sundays ago, I spontaneously crossed from my side of the sanctuary to the side where Ted sits. By the time I reached him, the many people who wanted to shake his hand had left. I grasped his hand, looked him in the eye, and sincerely said, “Peace be unto you, Ted.” He returned the peace as I had given it. Last Sunday, I crossed the sanctuary again, and this time he greeted me with a priestly blessing. I took that to mean that he remembers me, and that he accepts my presence. 

I earlier mentioned another person in whom I had confided, one who said, “Given how you feel, I don’t know why you’re here.” I didn’t respond at the time because I interpreted her comment as a criticism rather than a question. I will now approach her words as though they were a question: (1) I attend the Episcopal Church because Anglicanism originated in the 1500s, and I am irresistibly attracted to institutions that are old and venerable; (2) I attend the Episcopal Church because it puts me in contact with the holy, by which I mean objects, places, creatures, and activities, that instill in me extraordinary feelings of acceptance, wholeness, and appreciation; (3) I attend the Episcopal Church because it values love, beauty, nobility, inclusivity, and compassion; (4) I attend the Episcopal Church because it offers a permanent source of community; (5) I attend the Episcopal Church for the numerous aesthetic reasons listed earlier; (6) I attend the Episcopal Church because it is the most liberal church that has maintained a strong connection to Christianity; and (7) I attend the Episcopal Church because it is among the very few churches that welcome me without expecting me to I change.

Growing Up in a Cult

Cult: a relatively small and controlling group of people having beliefs or practices that are seen by others as strange or sinister.

I have often written about growing up in Mississippi in the fundamentalist Church of Christ and of having my first serious doubts about God’s goodness at age eleven and about his existence three years later. I want to approach the subject from a different angle, but I will first need to lay some groundwork.

I found it exceedingly hard to escape the Church of Christ, not just because it had been my primary social and religious outlet my entire life, but also because I had been told that no people are more miserable than those whom seek to avoid God’s purpose for humanity, which is to belong to the Church of Christ. 

During the seven years that transpired between my first doubt and the day, at age 18, when I abandoned the Church of Christ for the Episcopal Church, I did everything in my power to regain my faith. I sang, preached, and served saltines and grape juice to neighborhood kids from behind a packing box pulpit decorated with wisteria. When I outgrew that, I started preaching for real at age fifteen. I also led singing; presided over the communion table; and attended one Church of Christ service or Bible study or another up to nine times a week. I was enormously honored when different ministers invited me to accompany them to revivals they were preaching in Kentucky and Indiana. Yet, within my heart, my dedication to the church continued to drop ever lower, and I was too ashamed to tell anyone. To make matters infinitely worse, I came to believe that, because I had cursed God in a fit of rage for denying me the “gift of faith” at age twelve, I had committed the vaguely defined unpardonable sin. It’s a wonder that I maintained my sanity, torn as I was between no longer believing in God, yet knowing that he would torture me day and night for all eternity if I were wrong.

By age 17, I concluded that my problems with the Church of Christ were its fault, not mine, so I sought to liberalize the church by writing articles for the church newsletter, none of which were published or discussed. At age 18, I began a multi-year period of serious church-shopping during which I visited over 50-denominations (plus several non-Christian groups), but my heart was with the Episcopal Church from the day I first walked into one. After I switched, Church of Christ people I had known and loved my entire life shunned me. Surprisingly, not a single person bothered to ask why I had left. I interpreted the implication that my immortal soul wasn’t worth an hour of anyone’s time as a profound rejection.

I want to spend the remainder of this post doing something I have never done, which is to describe the beliefs and practices of the fundamentalist Churches of Christ, which is the group's formal name. This will be challenging because of the church’s numerous divisions. For example, some congregations use multi-tiered trays to serve communion wine (or grape juice) while others use a single glass. Other rifts have occurred over instrumental music, the permissibility of women Sunday school teachers, support for foreign missionaries, and the use of church buildings for non-religious activities. There being no minor differences within the Church of Christ, the more conservative of these groups accuse the more liberal ones of “willful disobedience to God” and assures them that they will spend eternity screaming in well-deserved agony. The Church of Christ as I knew it...

...considers itself God’s one true, eternal, and unchangeable church; 


...considers itself “the only path whereby man might be saved”;

...believes that God will guide all sincere seekers to the Church of Christ regardless of when and where they live, and that all who are not guided to the Church of Christ will suffer eternal torment in hell;  

...denies the possibility of honest mistakes in religious belief and practice;  

...relies solely on the Bible for doctrine and practice;

...insists that persecution had driven it underground for the 1900 years prior to its modern appearance in 1906;
 

...holds that churches that go by any name but the Church of Christ are in rebellion against God; 

...considers the Bible an error free guide to science, history, and the will of God; 

...holds that salvation comes through faith and works;

...meets in buildings that are plain inside-and-out with the possible exception of a cross on the steeple and atop the communion tray;

...the Sunday morning service consists of extemporaneous prayers, hymns from the turn of the 20th century, and the Lord’s Supper, which is seen as a memorial to Christ (as opposed to consubstantiation and transubstantiation, which are the view of the Episcopal Church and the Catholic Church, respectively). 

...expresses a special hatred for: liberals; for “Godless college professors who rob Christian boys and girls of their souls;” for the Catholic Church (“the whore of Babylon”); and for any church resembling the Catholic Church (particularly the Episcopal church);

...is mostly Trinitarian but doesn’t use the word Trinity because it isn’t found in the Bible;

...holds that sermons about love are optional but that weekly sermons about hell—followed by one or more altar calls—are obligatory (these sermons so terrified me as a child that I would hide under the bed when I got home); 


...is anti-science, anti-intellectual, and suspicious of higher education except at Church of Christ Bible colleges;


...practices immersion-only baptism starting at age 12;


...holds weekly communion (Mogen David Wine and Matzo crackers) for baptized members;


...practices congregational rule without denominational oversight;


...denies being a denomination;

...denies women the right to preach, teach Sunday school, make announcements, openly ask questions, or serve as elders;

...believes that instrumental music in church is anathema to God;


...has no licensed ministry;


...members call one another Brother ____ and Sister ____;

...has no special titles for ministers but commonly refers to them as Preacher ____;


...believes that churches that call themselves the Church of Christ, but don’t believe or practice like one’s own Church of Christ are in willful rebellion against God;

Lively Debates

I spent enough time with ministers that I was privy to many of their informal religious debates, which I will offer as further illustrations of the church’s mindset. In one debate, opinions varied regarding the fate of a theoretical person who “accepted Christ into his heart, but died in a car wreck on his way to be baptized.” (This question came up during a revival that was being held at a country church that had no baptistry, making it necessary for the candidates to be taken to a town church that did.) Another debate concerned the minimum age at which God will cast a non-Church of Christ child into hell. There were also debates over the fate of a Christian (i.e., a member of the Church of Christ) who died without having begged God’s forgiveness for his or her latest sin. 

Yet another debate occurred between two Church of Christ preachers and a 13-year-old Methodist girl (this was possible because she had attended a Church of Christ skating party with a friend). She knew her Bible well, and this enabled her to swap verses in a debate over whether salvation comes by faith alone or by a combination of faith and works. The preachers’ admiration for her knowledge (if not her courage) was evident, and no one could have seriously argued that she was in willful disobedience to God, yet according to Church of Christ doctrine, she was nonetheless destined for hell. 

Then there was a long ago night in Georgia when my elderly relative named Carrie told Peggy that she and her entire Southern Baptist family were going to hell if they didn’t join the Church of Christ. I had warned Peggy that such a view is consistent with Church of Christ doctrine, yet Carrie’s words left Peggy in tears as surely as a slap in the face would have done because no one had ever said such a thing to her, and because she was hearing it from someone whom appeared to like her and had treated her kindly.

Not everyone who leaves the Church of Christ as I did carries lifelong scars. My two sisters left without regret, and my brother [who lives near you in Sour Lake, Texas] wasn’t even perturbed when the Church of Christ disfellowshipped him for performing music in nightclubs. My siblings were able to escape unscathed because they had managed to keep the Church of Christ at the periphery of their lives (Peggy did this with the Baptist Church) whereas the Church of Christ became my life during early childhood when I accepted its claim that I would be forevermore miserable if I left it, and that I would incur hellfire twice over if I were to later join another church. In the eyes of the Church of Christ, I could have hardly done worse than to join a church that owes its existence to a wife-beheading 16th century British king. 

Thanks to the Church of Christ, I spent much of my childhood in terror, and when adults do that kind of thing to children, they should suffer for it. I tell myself this, but because my father’s father and his father were Church of Christ preachers, I don’t know if I believe myself. I try to find peace with my anger by telling myself that they (along with my parents, friends, and preachers), meant well, but that seems too low a bar when it comes to intentionally terrifying children, not just once or twice, but multiple times a week from birth until adulthood. 

I will devote my next post to the Episcopal Church.

Panceatic Cancer, Part 9: An Update

On Monday, Peggy had a CAT-scan following her sixth chemo; the results were encouraging. Marc, her oncologist plans to give her six more treatments, and assuming they go well, will follow them up with radiation, and a possible pancreatectomy. 

I asked Peggy in advance for permission to take a picture of her and Marc. When she said no, I persisted, and she objected that Marc wouldn’t want his picture made. I considered this unlikely, but he went me one better by suggesting that his assistant take it so we could all appear. When Marc read her shirt, he said, “I take full credit.”  Perhaps he meant to say that she looks good, as indeed she does, although I thought she looked better when she had no hair at all. 

Within minutes of meeting Marc for the first time, he said that choosing palliative care only would be a reasonable option, and that if she did so, she could expect to live six months. That was four months ago.

As always, he warned her that the chemo will eventually stop working, or that her body will cease to tolerate it. She wished that he hadn’t said this on the happiest day since her diagnosis.

Yesterday, she had her seventh chemo and her second bone strengthener. It's such a terrible combination to endure that she prepared for it by taking an Ativan. She has a number of drugs that many people would kill for, but she rarely takes them.

 

Peggy Lose Her Hair but Has Exceeedingly Good News

Peggy is sick in bed following her fifth chemo yesterday (the photo predates her hair loss). Despite never feeling normal and being dogged by the shooting stomach pains that accompany pancreatic cancer, her prescribed ten minute walks have grown into an hour-long affair, and she is back to working out with weights. 

I had a friend named Mina who stopped chemo because she believed Jesus had cured her of breast cancer. A popular Methodist lay minister, she convinced enough people that she was cured that she was interviewed on the evening news. Then the cancer killed her, and the evening news remained silent. I also have a Christian friend who is cancer free five years after being told that she would die within the year. As did Mina, she credits Jesus. Then there was the wife of my father-in-law’s preacher who refused medical care for skin cancer because she believed God when he said: “The prayer of the faithful will heal the sick.” When her pain became unbearable and she could no longer eat, surgeons removed her lower jaw and other parts of her face, after which followed a lingering death. Except for Peggy and me, almost everyone who knows of Peggy’s illness has promised to pray for her, and no doubt some of them will interpret her good news as proof that prayer works.

Every other Monday, Peggy has blood tests followed by a consultation with Marc, her oncologist. On Thursday of the same week, she returns for chemo. This Monday, Marc announced that she is tolerating chemo so well that he plans to keep her on the same high dose. He also said that her CA-19 (pancreatic tumor marker) has dropped from +5,000 to 760, and hinted that she might be among the 3% of patients who survive for five years. As good as all this sounds, Peggy later wondered how she can bear taking chemo for the rest of her life. Despite her fear, she, like Jiminy Cricket, has long vowed to live to 103 to see what such an advanced age feels like, and she rejoiced that the possibility of her keeping her word is once more within the realm of believability

Following her second treatment, Peggy’s hair started falling out, so rather than have it look ever more mangy, she had me cut it. This didn’t do either of us any good, her for obvious reasons, and me because, no matter how gentle I tried to be, she kept lunging forward and yelling, “Ouch!” By the time we were done, I was a trembling wreck, although I felt some better after she admitted that her scalp had been hurting all day. When the clippers finally fell silent, she contemplated herself in the bathroom mirror for a long moment before announcing, “At least, I have a nicely shaped head.” In terms of resiliency, she’s surely stronger than I, and I doubt that the very few people who beat pancreatic cancer have anything going for them that she lacks.

I’ve since told her scores of times that she’s as lovely as ever and that she doesn’t need to cover her head for my sake (I enjoy kissing it) either at home or abroad. She initially found this hard to believe, but even if I could pull off lying a few times, I couldn’t get away with lying everyday, which is what it would take due to my habit of frequently complimenting her appearance.

I just heard the clanking of umbbells, marking this as the first time Peggy was able to lift weights the day after chemo. Meanwhile, Sage, our sole tabby since Brewsky died, is beside me asking for a belly rub. If he ever needs chemo, I doubt that he’ll look good without hair.