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.