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

The following was written on May 20, the day after Peggy's  CAT/CT scan. I have but little time for editing.

We didn't get fifty feet from the house on our way to the hospital for Peggy's PET/CT scan before feeling the sickening rumble of a flat tire. Our neighbor's car was home, so I ran over to ask if he could take us to the hospital. He said he was in an online business meeting and asked if I could wait five minutes. I said that we were having semi-emergency, and he left his meeting. While I was talking with Kevin, Peggy was running in circles, holding her head in both hands, and screaming: "NO, NO, NO, NO NO, NO, NO!" A passing bicyclist asked if she needed help. She said no, but then called him back. He promised to have her on the road in no time. When Kevin and I arrived, I told him that we didn't have the time to wait for a tire change, even a speedy tire change. After making sure there was nothing more he could do, he left.

While checking in at Oregon Imaging, Peggy was unable to remember her birthday. She desperately wanted me to be with her when the technician started her radioactive iodine drip, but the woman who came to take her to the back refused.  I waited for Peggy to speak, but when she stood silent and defeated (behavior that is rare for her), I said, "My wife is here to find out if she is going to die. She is very afraid, and she needs me to be with her." The employee then said (grudgingly, I thought) that I could go as far as the next waiting room, but absolutely no further. 

When a Hispanic imaging technician named Katie entered the waiting room, I asked her if I go with Peggy to the IV room. Upon seeing our tears, she said, "Absolutely!" We immediately believed that Katie was both a good technician and a good human being, so I trusted that I was leaving Peggy in good hands.

I next took a walk around the outside of the large hospital. On the quiet backside, I happened upon a solitary man whose employee ID badge read, "Daniel Martinez, Driver." When our eyes met, he asked me how I was. I could tell that he really wanted to know, so I told him through my tears. When I was done, he asked, "Are you a man of God?" I said no, wondering if he was about to preach to me. He instead said that I was going to need support and suggested that I see a psychologist. I said that I am on good terms with an Episcopal priest, and that I would talk with him if Peggy has cancer. Daniel's phone then rang and he had to go to work, so we shook hands and went our separate ways. I spent the next two hours walking in and around what is the biggest hospital between San Francisco and Portland. It was then that I took the enclosed photos

On May 21 (the day after I wrote the above), Peggy got an early morning email saying that Kirk wanted to see her in his office at 5:00, and that he had ordered blood tests and another MRI. I will continue my account today if possible, but if not today, then certainly tomorrow. It might seem like a cliff-hanger of an ending, so I'll just say that we still have but limited answers.

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.