Pancreatic Cancer: Part 5: A Deeply Personal Perspectivve

 

Marc Uemera

I'll begin with a brief update for those who don't know what's going on. Peggy, my wife of 53-years--has been told that she has pancreatic cancer that has spread to her hip. She is in pain, is constantly cold, is growing progressively weaker, and spends much of her time in bed, some of it in tears. Our lives have become a living hell in which we have been abandoned by some of the people we looked to for support, most notably Peggy's sisters who I wrote about in my last post. This morning, I sent them the following:

"You responded to my cry for help for Peggy and me by trashing me for my supposed weakness. This has caused me to hate you, but I can live with that. A far worse result is that by trashing the very man who is one with your sister and who is doing everything he possibly can to help her, you have made it impossible for Peggy to share her grief and terror with you. I can't imagine why your contempt for me is so strong that you would allow it to alienate your sister when she is in fear of death and desperate for your help, but that has been your sole contribution to her care. I have no idea how you can repair the devastation you have inflicted upon someone you claim to love, but if you don't at least try, she will continue to be gone from your lives at any intimate level."

I don't expect a response, but I felt that I had to at least try to make them aware of the damage they have done. Week before last, a biopsy was performed on Peggy's pancreas by sticking a tube down her throat and cutting through her stomach wall into her pancreas. As expected, the tissue came back positive for cancer, and she was referred to an oncologist named Marc Uemera  (https://www.oregoncancer.com/physicians/marc-uemura-md-mba) who she saw last Monday. Marc said that she will most likely be dead in six months if she chooses palliative care only, and in one to two years is she chooses aggressive treatment. She chose the latter and was referred to a surgical oncologist named Diego Muilenburg (https://www.peacehealth.org/care-providers/diego-j-muilenburg-md) for the installation of a port-a-cath, a device through which chemotherapy drugs are injected. 

Diego asked her why she hadn't had a biopsy of the tumor on her hip to verify that it is cancer and that if it is cancer, the cancer came from her pancreas. We said that we had asked Marc to do this, but he said it wasn't necessary. Diego said that he was uncomfortable with her not having a bone biopsy because pancreatic cancer rarely spreads to a person's bones, and although such a biopsy can cause a great deal of pain, there is a 5% chance that the tissue sample will be negative for pancreatic cancer. If this should be the case, he could hopefully cure her pancreatic cancer by removing her pancreas, and then treating the tumor on her hip as a separate problem. Diego's words gave us the first ray of hope that we have seen since her diagnosis.

When we jumped at his recommendation, he said he would ask Marc for permission to do the biopsy. In surprise, I asked why he couldn't do it even if Marc said no, and he said that, technically speaking, he could, but he smilingly implied that doing so would damage his relationship with Marc. In response, I said that if Marc denies permission, we will find an oncologist who will give it. Diego advised against this, saying that Marc is the best pancreatic oncologist in Eugene. So it was that Diego texted Marc for permission, and Peggy called Marc's office on the way home to say that she wanted the biopsy. 

An hour later, permission was given, and so it is that the torturous wait has begun for yet another desperately needed procedure. Peggy has given me her medical power of attorney, and she and I are both assertive when it comes to speeding things along, but there is often nothing we can do aside from insuring that she isn't forgotten (it is my experience that patients who are unassertive are sometimes put on the back burner, even when speedy care is essential.

In my last post, I described myself as the lion at her gate, and this is true when it comes to being an aggressive partner in her fight against cancer. However, I sometimes feel like lion who has smoked meth, and this can pose a problem when dealing with caregivers whom I am trying to persuade to do something. Two weeks ago, there was a day that would have been shitty without her medical issues, but was shitty times twelve times over because of them. At one point when I got off the  speaker phone from calling a doctor's office, I asked Peggy if the woman to whom I had spoken seemed defensive, and Peggy said that she did, and that the reason might have been that I had seemed frantic all day while trying to get appointments made and procedures done. I knew that I felt frantic, but I didn't know it showed. It is hard for me to avoid becoming so overwrought that I can't calm down. This makes it impossible for me to sleep at night even with 25 mgs of Ambien and 3,600 mgs of Gabapentin. I feel like I'm about to fly apart, and this gets in the way of me adequately representing Peggy.

Another major problem is that Marc told Peggy that her hip is so weak that it could break if she walks much, and that if it does break, an orthopedic surgeon would be reluctant to repair a cancer ridden bone. Because long walks are Peggy's major form of exercise and relaxation, it is very hard for both of us that she has to give them up. We have an exercise bike, but her hip hurts too much to use it.

Yet another problem is telling people--especially friends--the bad news because it upsets them, and they don't know how to respond. Sometimes, we make the spur of the moment decision to tell near strangers or even complete strangers. For example, when my dentist asked how I was, I told him the truth, and, to my surprise, he spent ten minutes asking medical questions about her care. Unfortunately, I suspected that his interest had been based upon curiosity rather than concern. 

I'm 76, so I've seen a lot of life, but nothing has prepared me for what I'm going through now. Peggy's illness has taken both of us to lows we never thought possible. On the bright side, it has made our bond stronger, and has allowed for a degree of emotional honesty that we have never shared. For example, I have always been uncomfortable with letting others see me cry, including Peggy. Now that I cry on and off throughout most days, I can no longer hide my tears, and I have lost all shame in allowing her, or anyone else, to see them. Fortunately, I've been able to hold myself together in doctors' offices, and that's important because what I want from doctors is their best thinking, not their sympathetic support.

Bone and Pancreatic Cancer: Part 4: Life Turns to Shit

 

Dianne, Jimmy, my father, and Peggy, in our trailer home, 1972
 

I haven't written sooner because too much has been happening, and it is also for this reason that I haven't visited anyone's blog. Just know that I offer you my sincere thanks for your support, the moreso because I have become so nearly reclusive in the past decade or two that I know only person who lives nearby, and with whom I can share the full extent of my misery, and I haven't seen him for three years. It's not that I don't want friends; it's that I've become vaguely disappointed with what other people have to offer, and with how little other people seem to value what I have to offer. Now...

Peggy and I are on the verge of collapse. Some examples of what I mean... We are so consumed by fear that we can't think straight and we keep losing things. Our home phone went missing for three days. Books, shoes, wallets, stereo controls, car keys, shopping lists, and garage door openers, have all disappeared, some of them multiple times. Twice, I've taken a half dozen or so things from the big freezer in the garage in order to reach something in the back, and both times, I failed to put them back. For my entire adult life, my blood pressure was around 125/70. Today at the endodondist (I just had a five hour root canal over a period of two days) it was 195/128. As was getting out of the shower yesterday, I spent a long moment trying to remember how to turn the water off. I'm functioning so poorly that I'm terrified by the knowledge that Peggy's very existence could depend upon my ability to function well. Even so, our 54-years together have made us as one, and I am determined to be the lion at her gate, so I must be strong and vigilant no matter what, but it's so very hard. I'll use yesterday as an example of how both of us are doing.

It was a day on which we were dealing with one overworked druggist and three doctors, and because I'm legally authorized to speak for Peggy, I spent nearly as much time on the phone as she did, and that was a lot. Yet it was one of those days when it seemed like everything that could go wrong did go wrong. Peggy's pain was worse. Two packages were stolen off our porch. Doctor visits that we were trying to schedule ASAP were delayed because insurance hadn't approved them; or because one person had failed to call another person; or because a doctor hadn't filled out a particular form. We walked to the pharmacy to get our Covid boosters and to pick-up Peggy's Tylenol 3 and my Buprenorphine, only to learn that the pharmacy was out of vaccine; and that our regular doctor was out of the office, and his replacement had denied our refill requests (we finally got them approved). I now stop breathing twenty times an hour while sleeping, so each time, I partially awaken to gasp for air. I'm told that I need a new sleep study, but I don't want to take time away from Peggy to get it done. I could go on, but I will stop here because there's something else I want to share. I question the appropriateness of what I'm about to tell you, but I'm going to do it anyway. Because it's a story that  could take pages, I must of necessity condense it somewhat.

After Peggy learned that she had pancreatic cancer, I pondered the fact that we have little support to help us survive the coming ordeal. I soon hit upon the idea of forming a sister-based support group that would primarily focus upon Peggy, but would also support me and everyone else, by which I mean Peggy's sisters Pam and Dianne, and Dianne's husband, Jimmy. I will now tell you about the result, but the story is so strange (in my view at least) that I will preface it as follows. While I have never argued with any of these people, I have also never felt close to any of these people, and I've only seen them twice during the 39-years since Peggy and I left Mississippi. 

Even so, I was confident that everyone would embrace my idea. Jimmy said that he was interested; Pam said, "You need to get over yourself"(?); and Dianne didn't respond at all, although she later told Peggy that I was only wanting to form "a pity party"). I was so shocked by this hostility that I seriously wondered what I had done to make these women hate me. On the upside, they had told me where I stood, and knowing this would spare me disappointment later on. 

Before I leave the subject, I'll share my final email exchange with Dianne, which occurred on Saturday. It's obviously a continuation of an earlier exchange, but you can still make sense of it. In the following, when I used the word yesterday, I was referring to a procedure that Peggy had a day earlier in which a endoscope was run into her stomach; a hole was cut through the stomach wall; and tissue was taken from her pancreas. It was the first of perhaps two biopsies, and it conclusively verified that she has pancreatic cancer:   

ME: "I acknowledge that you too need support. I tried to give you support yesterday by texting frequent updates and by having Peggy say hello to you on my behalf. It is such gifts of affection as these that I want to give to you on a regular basis, but to do so, I need your affection in return."

Dianne: "No" 

After sending this one word response, she texted Peggy as follows:

"I have blocked Lowell from my phone. I don’t ever want to hear from him again. He feeds on this kind of stuff and I refuse to take it anymore. I’m sorry you are hurting. I am too." 

By "kind of stuff," I suppose she meant that my sharing of emotion is excessive, perhaps unmanly. As for blocking my calls, the number she blocked is the number of our landline from which Peggy often calls her, but I never do, In fact, I don't think I have ever called Dianne from any phone, but if I did, it was only to leave a message. Peggy is so hurt by her sisters' behavior that she has ended contact with Dianne, and has said that if one of them should propose a visit, she would say no. As for my reaction, I feel terrible that my attempt to form a supportive group led to a Titanic-size disaster. Peggy saw it coming (possibly from things her sisters had said about me) and even warned me that my attempts might lead to ruin, but I saw no reason for her concern, so I didn't listen.

Bone Cancer: Part 3: PET-CT Followup in Kirk's Office





Kirk (see photo) said that the PET/CT Scan showed two areas where cancer is likely. One is the ping pong ball lesion on her ilium that we already knew about; the other is a spot in her pancreas that we didn't know about. Although Kirk assured us that her life can be prolonged, I later learned online that her odds of surviving until next year are only 10%. 

During our visit with him, she asked that Kirk do the following: 

(1) Prescribe something for her rapidly worsening pain. (He gave her Tylenol with Codeine, and told her to let him know when she needs something stronger.) 

(2) Put a note in her chart saying that she wants to begin the process of obtaining life-ending medication through the Oregon Death with Dignity Act. He readily agreed to do this, and added that it's best to apply early (perhaps, he was thinking of instances in which people have been accused of goading a sick relative into suicide).

When we got up the next morning, the results of the blood tests that she had on her way to Kirk's office were online. They were normal with the sickening exception of the CA 19-9 pancreatic tumor marker. The normal value for this test is 37; Peggy scored +1000.

As we were leaving Kirk's office the previous day, my eyes had met his, and I saw in them an expression of horror unlike anything I've ever seen on anyone. I couldn't imagine the reason for this because I had thought that, since Peggy's body wasn't riddled with tumors, we had years, together, rather than months. When I got home and googled pancreatic cancer survival rates, I knew the reason for his anguish.

For decades, he has never seen one of us without also seeing the other, but I fear that we're nearing a time when, for however long I live, I will see him alone. 

I was working on my grocery list while waiting for Kirk to enter the exam room. When I turned the paper over to write on the back, I found a poem that I had written in the late '70s. When Kirk arrived, Peggy shared it with him, and he spent a long moment pondering it.

I would take Peggy's disease into my body in a heartbeat and count myself lucky to do it, so why is it that I cannot escape the selfishness of continually thinking of my own pain? 

Bone Cancer: Part 2: May 19: PET/CT Scan

Bone Cancer: Part 1

The following was written on May 13, and is the first segment of an ongoing narrative. Please forgive me for leaving you in the lurch; I will get you caught up as soon as I can.

In February, Peggy began to complain of pain shooting down her upper right thigh. On March 5, she went to her internist of 35-years, Kirk Jacobson for diagnosis and treatment. Kirk thought the pain was coming from her hip and ordered a hip x-ray. When nothing was found, he ordered a lumbar spine x-ray. When Peggy saw Kirk again on April 11, he ordered an MRI of her lumbar spine. When bulging discs and stenosis were found, he sent her to a pain specialist named Adam Kemp for a possible nerve block. Peggy saw Kemp on April 24, and was told that the pain might be caused by an inflamed tendon in her right hip, so he ordered an MRI. She had the MRI done six days later, but couldn't see Kemp's schedule for a follow-up appointment until June. 

Because her pain was worsening daily, she called Kemp's office on May 7, and said that she couldn't wait until June to see him. She also asked for a copy of her MRI results but was inexplicably refused. Due to a cancellation, she was able to see Kemp the next day (May 8). While she and I were waiting for him to enter the exam room, a woman walked in, handed Peggy a piece of paper, and walked out. Peggy saw that the paper contained her MRI results, which alluded to "the possibility of metastatic bone lesions to the iliac bone." Kemp hadn't looked at the results prior to entering the room, and, upon seeing them, blamed Oregon Imaging for not alerting him to their seriousness. 

He then ordered three additional imaging tests, but when Peggy called later that day to make an appointment she was told that one of his orders needed clarification. An order that didn't need clarification called for a CT scan of the right hip, and Peggy had one done on May 10, two days after seeing Kemp. This time, she asked Oregon Imaging to send her the results directly. On May 12, they emailed her a report which contained the terror-instilling words: "This most likely represents osseous metastatic disease". 

Eight days later, Oregon Imaging still didn't know what Kemp wanted done despite Peggy, Oregon Imaging, and me making repeated and impassionedd (at least on my part), efforts to find out. She called Kemp's office a final time on May 14, to say she was done seeing him so there was no need for him to clarify his orders. His office called the next day to say that his orders had been clarified. During the week that we wasted calling Kemp, Peggy called Kirk (her internist), and explained the situation. Kirk immediately ordered a PET-CT scan, which is to be done on Monday, May 19.
 
Bone cancer that originates in the bone constitutes only 1% of all cancers. Secondary bone cancer is terminal and can originate in many places. In women, it most commonly migrates from the breasts or lungs. If she has boner cancer and if it came from her breasts (she has yearly mammograms), her odds of being alive in five years is 13%. If the cancer spread from her lungs (she has had lung problems since getting Valley Fever in Fresno, California, in 1986), the likelihood is that she will be dead this time next year.

An Afternoon in Heaven



Looking west from near the summit, source unknown

1,518-foot Mt. Pisgah got its non-Indian name 175-years ago when an early settler felt such joy upon seeing Oregon's Willamette Valley from its summit that he named it after the mountain from which Moses saw the Promised Land. The 2,363-acre park that encompasses Pisgah today offers oak prairies, fertile bottomlands, a dense conifer forest, 17-miles of trails, and a 209-acre arboretum, along with deer, rabbits, bobcats, coyotes, numerous hawks, and an occasional bear or mountain lion. We invariably see multiple large hawks and an occasional buzzard riding the mountain's air currents. On our last visit, we saw a colorful bird called a paraglider.

Pisgah was born 40-million years ago as a pool of subterranean lava that, over the millennia, hardened into basalt, diabase, and a smattering of snow white mesolites. The erosion which exposed the mountain continues to keep the depth of its soil shallower than the length of my hand. At the flat bottom of the mountain, the soil is deep and rich thanks to erosion from Pisgah itself and to deposits that were carried from the Cascade Mountains by the Coast Fork and the Middle Fork of the Willamette River. 

February through May are my favorite times to visit Pisgah because that's when leaves open, flowers bloom, and hundreds—perhaps thousands—of burbling streams bring beauty to the eye and music to the ear. I get a thrill from finding the very place where one of these streams breaks through to the surface.



In the photo, Peggy is relaxing on one of scores of benches that honor dead loved ones. A nearby bench commemorates the life of a 31-year-old murder victim, and another contains drawings done by the six-year-old girl to whom it pays tribute. I'll enclose a photo of one of the many dedications that touches me. The mountain in front of Peggy is 2,058-foot Spencer Butte, the highpoint of a 12-mile trail that will someday encircle Eugene.


After moving to Oregon in 1986, Peggy and I climbed Pisgah three times a week with a group of six to twelve friends. It was still a working ranch, and despite being afraid of the cows, Peggy called it my holy mountain, and everyone would sing The hills are alive with the sound of music...when we summited. We climbed year round in good weather and bad, although it meant descending in the dark of winter. Now, the rancher's cows are gone; the park closes at dusk; most of our friends have moved or died; and we almost never hike to the summit. 

We seldom choose to a destination, but when we do, it's often a mysterious labyrinth within an abandoned quarry. Because most visitors take primary trails, we usually have the quarry to ourselves, and we enjoy examining the offerings that were left since our last visit.

We recently spotted two coyotes. They were too fast for me to film, but I got a photograph of their scat and Peggy recorded their voices (turn your volume up and note the distant reply). Ten minutes later, we met a woman who excitedly reported seeing a bobcat. We later found bear scat.

A barn and a large Quonset-hut remain from ranching days, and we sometimes picnic in the latter while enjoying Fancy Cloud Friends' latest artwork: https://www.threads.net/@fancycloudfriends .



In January of 2024, Eugene was hit by an ice storm which closed the park for two long months. Its effects remain obvious in the form of downed limbs and broken trees--note the Douglas Fir Cone on the standing trunk of a dead maple. Soon after I moved to Oregon, a forestry student who has since died taught me to identify these cones by looking for the tails and hind-feet of scurrying mice. Each of these tiny cones can produce dozens of 330-foot-tall trees.

I'll close with an example of Mt. Pisgah's seasonal streams. While they might be less memorable than booming waterfalls hundreds of feet high, my life is far more enriched by these humbler members of the waterfall family. I am pleased to say that I have the good fortune of living but nine miles from the one place on earth that I most enjoy visiting. 

 


A Tour of my Refuge and Sanctuary

This is my bedroom. The walls of my bedroom are pink, and the walls of Peggy's bedroom are green. Every two weeks, we clean house, and it is then that I change out many of my decorations. It is for this reason that you might see the same item in two locations. We bought the silk painting atop the mirror in Nuevo Laredo, Mexico, in 1972. When silk-paintings of John Wayne and Elvis Presley became popular, Peggy wanted to discard our desert scene. I go along with most of what she wants, but on this occasion I demurred. The cat painting to the left of the mirror came from a St. Vincent de Paul Store in Eugene, and the wall-hanging above my BiPap is a pressed-plastic picnic scene that came from a junk store in Wisconsin
 
 
The brown heart to the right of the second photo was a gift from a British blogger. I call both Peggy and the sleeping squirrel to the left of the photo, Fluffy, Fluffer, or Fluffy Squirrel.

 
I used to have 44-plants in my bedroom, but am now down to the ones in the photo plus an Aglaonema that stays in the den. The white cat was a gift from an elderly neighbor named Helen who has since died. In front of the white cat are wasps' nests (I love wasps and bees), petrified wood, and ceramic pieces by the same British blogger who gave me the heart.
 
 
In January, my collection of Civil War books reached the point that I paid $50 for the above bookcase at a Habitat for Humanity store. When the ensuing book shuffle was complete, my Civil War books were in the hall, and my new bookcase contained books about cats, knots, and domestic plants. The poinsettia blanket is one of several bed-coverings that I use to keep cat fur off my spread.
 
 
Our youngest catfive-year-old Harveyis relaxing amid my cat library. His luxuriant ruff isn't visible, but his snarky expression is. He is so beautiful that I become the world's first bitch to a cat.

 
I bought the white rabbit holding the carrot at a junk shop sixty miles from town while on an outing with my friend Walt (https://snowbrush.blogspot.com/2023/11/invitation-to-suicide.html). Determined to maintain my manly image, I didn't buy it that day, and so it was that Walt had to drive me back for it the next day. The plaster-of-Paris animal to the right of the rabbit was so well-cuddled that it's identity is indecipherable. I love many damaged possessions. For example, I used to collect broken-legged horse knick-knacks because I couldn't bear the thought of the store throwing them away. I didn't realize that my father knew about my horses until he started crying about them the year he died.
 
The dark-colored cat below the stuffed cat is Bastet, my only overtly religious symbol. I bought the fox to the right of Bastet at the Jackson, Mississippi, zoo when I was seven in honor of a wolf that spent his nightmarish existence pacing rapidly back and forth inside a small cage. I thought my fox was a wolf until twenty years ago Peggy laughingly informed me of my mistake. The blue mug to the right of the "wolf" contains bookmarks that I cut from Christmas cards. 
 
 
My mother made the needlework tree as my Christmas present in 1976.

 
The wolf in snow came from a long-forgotten antique store run by a delightful lady named Penny who died of Alzheimer's. The rock on the floor fell from Symbol Rock, a 40-million-year-old Cascade Mountain basalt formation that an extinct Indian tribe worshiped, as do I.
 

 
I read in bed from 10:00 until 1:00 each night and am often joined by four cats (all four are in the photo). A fifth cat joined us until he got mad at me for swatting his tush when he attacked my defenseless girl cat, Scully (she's sitting in the photo). That dire event occurred five years ago, yet I'm lucky if he joins me twice a year. I have multiple nicknames for my various cats. For example, Scully answers to Girlfriend, Beauty Girl, White Whiskers, and Pretty Lady Cat. As is the way with men, my love for my male cats often wears a disguise. For example, Brewsky (the tabby at my feet) is Sweet Man, Patriarch of the Cat Side of the Family, and Lard-Ass; while Harvey goes by Sweetheart, Pretty-Pretty Cat Man, Most Beautiful Cat on Earth, and Shithead
 
Albert Schweitzer well-expressed my own delight in cats when he wrote:

There are two means of refuge from the misery of life, music and cats.            

Please Accept My Apology


Since Donald Trump's inauguration; the beauty of my bedroom; the solace of nearby Mt. Pisgah; and the affection of Peggy, our cats, and some of you, are like islands in a stormy sea. What I would like to do right now is to share a pleasant post that I have been working on for weeks about my bedroom. Unfortunately I feel ethically compelled to first apologize to you for what is happening in America. I'm especially concerned about the feelings and opinions of readers who live in Britain, Canada, Australia, India, and—prior to the invasionUkraine (https://dablogfodder.blogspot.com/). It is they who constitute nearly all of my active readership, and this is what I want them to know:

(1) I am ashamed of what my nation has become, and I am frightened that it will continue its hellish dissent into totalitarianism.
 
(2) I cannot divorce my personal identity from my national identity. 
 
(3) I worry that my non-American readers will also be unable to divorce my personal identity from my national identity, and that this will lead them to abandon me.
 
(4) Only a callous, arrogant, petty, and vicious nation, could elect a demon like Trump and stand passive while he destroys its democracy. Although offering you my apology might seem pointless, I don't know what else to do, and it is surely better to apologize than to behave as though everything were normal.