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.