Sobering News

Dear ones,

We’re feeling our way into the mixed blessing of modern technology. Assuming you have expressed an interest in getting this information, thank you. Your thoughts, prayers and warm well wishes are both welcome and felt. Bryn says he sometimes can sense an unseen safety net around him, buoying him up. We like to think that’s the web of connection making itself known. 

No promises as to how often we’ll post these updates: life is in flux and things are a whirl at the moment—we’re slow getting this first installment posted. That said, know that we appreciate your loving support.

Sincerely,

Dave and Bryn

Bryn

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At a glance:

October 2019.   Bryn feels unwell, can’t see any reason why. Throughout the month and the next one he sees the doctor several times and test after test comes back “all clear.” Except that is is not all clear and the pain continues. It started with the sensation of a knife stabbing into the base of the rib cage and being drug laterally across. Next the pain focuses on lower back, then middle-lower back, then gut, then lower back again. It ricochets  off off these three points, sometimes lighting up two or three areas at the same time. Since his doctor is finding nothing, Bryn seeks chiropractic treatments, hoping this will help. The pain continues to ramp up, as do the medical bills for (some expensive) tests that all say nothing is wrong. 

Over a given weekend the pain is especially severe. The doctor has no openings that Monday, so Bryn agrees to drive 45 minutes to a satellite office where he can see a nurse practitioner. She encourages him to get an ultrasound of the chest area. He refuses to throw more money down the rathole of tests that keep coming back clear. She bargains with him, “If I can find you a CT scan for under $400, will you have it done?” He agrees and she’s as good as her word. It’s a low-cost, low-res scan that will ultimately have to be repeated at high-res (and higher cost), but this is the test that comes back showing a suspicious growth on the pancreas. Thank heavens for nurse practitioners who listen to and are willing to work with their patients.

A high-res CT scan indicates the need for an endoscopic biopsy of the pancreatic tumor, Bryn’s first-ever surgery. He makes it through fine. That night the pain ramps out of control. “Take him to the emergency room,” Dave is told. Bryn refuses to go. He wants medicine for the pain, not a huge bill for a visit to the ER. Nothing doing. The surgeon’s fear is something may have gone dreadfully wrong and Bryn may die. Bryn counters that as pancreatic cancer carries a very similar prognosis it won’t make that much of a difference. He just wants something for the pain. Ain’t gonna happen.

Bryn survives the night. Dave calls Bryn’s regular doctor the next day. No, they won’t give out anything for pain since they didn’t do the surgery. Call the surgeon. Nope, surgeon insists Bryn go to ER. He’s just a once-and-done surgeon; pain management is the responsibility of the regular doctor. We call the regular doctor back. No, he didn’t make the referral to the surgeon. Contact the nurse practitioner. Meanwhile, the pain continues. Back to the surgeon who says, “Go to ER for a CT scan.” Sheesh.

In the end Bryn asks the surgeon to order the durn CT scan so as to avoid the ER charges. Bryn has the CT scan which shows the surgery went fine; he’s just in need of something for the pain. Even now the surgeon refuses. Pain management is not his responsibility.

Bryn can count on being up three or more hours each night with pain. Bed to couch, back to bed, back to couch, then soaking in a scalding hot bath, sleeping with a heating pad, making it through one moment to the next. Tylenol and Exederin within reason, pain a constant companion.

Ability to work is compromised. He misses more hours than he makes it in for. On Christmas Eve he meets with the top pancreatic surgeon in Indianapolis who delivers the news: it is inoperable pancreatic cancer. Chemo is suggested.

Bryn meets with an oncologist. She promises pain relief. And comes through for Bryn on the weekend the kids and grandkids and grandparents get together to celebrate Christmas. Bryn has a couple of days where he is able to be present to something and someone other than the pain. By Christmas Day the pain ramp way up again. Days continue like this...unremitting pain. A flurry of medical appointments. Surgery to have a port put in so Bryn can get started on chemotherapy. And still pain.

Then chemo. Not only pain, but nausea, diarrhea and other side effects as well. 

Bryn and Dave have some long talks about quality of life, the disease prognosis, goals for the time remaining. Bryn leans toward stopping chemo, asking for a focus on pain management, clarity enough to write a funeral oration, have some moments of being present to the grandkids, be able to put some of his affairs in order. He meets with the palliative care doctor, makes a cogent case for why he’s considering bowing out of chemo.

Says the doctor, “I don’t usually counsel any of my patients to stop chemo, but I’ve never met anyone quite like you.” The doc says he’s reviewed the chart, seen that no one’s promising chemo as a cure, says getting an additional month of life would be considered a good outcome. 

Bryn says he doesn’t care for an additional month if he’s going to be feeling as good as he has been. “This is not the quality of life that’s going to help me achieve my goals.” The doctor ups the dosage of pain medicine.

After further consideration, Bryn stops chemo after having had one round of it, signs on for hospice care. Has higher energy—four good days in a row, feels better in those four days than he has for three months. Makes progress on his funeral oration, other goals. Can finally summon energy for writing a little, talking on the phone, visiting in person.

Learns the hard way that energy is going to fluctuate. A hard day may follow a good one or not. No rhyme or reason. As word gets out, people email, telephone and schedule visits.

We schedule a photo shoot with a photographer who makes house calls. Have a lot of fun having our pictures taken.

Bryn and Dave caught in a snow globe

Bryn contacts Ball State University officials about their interest in accepting donation of his diaries and papers—a personal record of one man coming out gay at a unique time in the nation’s history. Yes, they’re interested in expanding the diversity of their holdings. And would you be interested in making a class presentation, review the story of your life? “Why, yes I would.” That presentation was on Wednesday of this week. It went well and Bryn enjoyed and appreciated the opportunity to share his story in this forum. As he was speaking one woman leaned over to Dave and whispered, “It looks like he’s in his element.” She was spot on. 

If we get a promised link to the video we’ll send it your way. Meanwhile, attached are a couple of proofs from the photo shoot. 

All this comes to you with gratitude for your support and caring and staying in touch. There is something to this unseen web, the cords of love that bind heart to heart to heart. I’m glad to be in it with you.

Thank you,

Bryn