Preparation first key

Any doctor visit is taxing–even when you are in good health. At least they were for Jane and me. And once you have a cancer diagnosis and appointments that are not ten minutes from your door, things get worse. The key to easing some of that stress comes down to prior preparation and then following through when you get there.

Good preparation is critical.

When I go to the doctor, I always go with a written list of questions, a notepad and a pen. Like most people, I get nervous in the presence of those white coats. If I don’t have my questions written out, I know I’ll forget to ask something I’ll regret later–like making sure to get a refill order for my prescriptions.

Cancer complicates things

My medical issues are pretty straight forward compared with any cancer. And NET cancer is about as complicated as cancer gets, at least in my mind. In addition, I wasn’t keeping track of things for myself; I was trying to make sure I understood what was going on for Jane.

…I know I’ll forget to ask something…

That meant spending time the night before talking over her experiences over the past days or weeks. I needed to know what had changed in her body. We needed to figure out what questions those things raised, both in her mind and mine. You don’t always get those things from routine conversation or daily observation. For example, I went to work every morning. I couldn’t tell how many bowel movements she had in the course of the day.

Finding the truth

And Jane was very good at hiding her pain and increasing lack of mobility. Any cooking or organizing she did took place during the day. I knew she went up and down the stairs, but only saw her difficulties on them when we went out together. I observed constantly, mind you. It just wasn’t enough.

…NET cancer is about as complicated as cancer gets…

In some senses, our conversations the night before an appointment became a rehearsal for that appointment. I asked the same kinds of questions I knew Jen would ask the next morning. Sometimes what she told Jen was very different from what she told me. I had to call her on it when she understated something. Jane didn’t always appreciate that.

Honesty and equality

But my job required her doctors have the most accurate information we could provide them. Love sometimes requires a toughness we’d like to avoid. Fortunately, Jane understood that most of the time. Caregiving is built on love and trust. You have to nurture that constantly. Maintaining honesty is part of doing that.

Jane didn’t always appreciate that.

But it is difficult–especially when you’ve been equal partners from Day One. Over time, caregiving can shatter that equality if the patient becomes increasingly unable to make their own decisions. With NET cancer, as the disease evolves, that increasingly becomes the case.

Two kinds of questions

Knowing accurately your partner’s physical and mental condition is only part of the preparation. The other is coming up with the questions that need asking and answering. You have one set of questions going in: Can I keep walking every day; why hasn’t the medication addressed the swelling in my legs; what does this sudden dizziness when I get off the toilet mean?

Caregiving is built on love and trust.

But other questions arise because of the conversation with the doctor. Part of that derives from the fact doctors often speak in medical terms rather than human ones. I remember one of Jane’s mother’s doctors who seemed to think everyone in the room had a medical degree, including Jane’s mother who had not graduated from high school.

Understanding doctor speak

Jane often understood her doctors better than I did. She taught biology and chemistry and understood how the two things related to each other. I was an English major. I dabbled in the sciences, but not at Jane’s level–and certainly not at the level of her doctors. And I had to understand what they said because Jane relied on me at home to know what needed doing.

…doctors often speak in medical terms…

Fortunately, I don’t mind asking seemingly stupid questions. I’d rather ask until I understand than pretend I do. As one of my students said, “Stupid people don’t ask stupid questions. Smart people do.” It’s a mantra for good journalists–but also a mantra for good caregivers. We have to understand what a doctor tells us with a good level of certainty. Ask until you understand.

Take notes

I carry a notebook with me everywhere I go. It’s a habit I picked up as a young journalist. Caregivers need to make sure they always have one with them as well. First, it’s a place to write down questions and observations as they come to you between doctor visits. The night before an appointment, you organize those things so you won’t miss getting them into the doctor’s head the next day.

…a mantra for good caregivers.

During the visit you take notes on everything: weight, blood pressure, test results, examinations, observations, recommendations. You check off each questions as it gets asked and take notes on what you get for an answer. You write down other questions as they occur to you from what the doctor says. And you record those answers as well. Before you go out the door, you need to check to make sure every question got an answer you understand–and that you left nothing out the doctor needed to hear.

Discuss what you learned with each other early

Ideally, you should be able to reconstruct the entire appointment accurately from your notes. And you want to do that with the patient as soon afterward as you can to make sure you both heard the same things. Your notes will likely be more accurate than their memory, however. And those notes will help you understand how things have changed since the last visit–or the first visit.

…take notes on everything…

From doctor visits we get the information we need to have to take better care of our partners and make better decisions down the road about treatment options. Good preparation is critical. Don’t neglect it. But remember, you have to do all of this and be emotionally and physically supportive at the same time.

Kubler-Ross’s stages

Popular culture has accepted Kubler-Ross’s Five Stages of Grief as truth. Studies done since her book, On Death and Dying, was published have poked lots of holes in the idea, but people still think of it as reality. It serves as the base for how lots of people deal with the loss of a loved one. But the model doesn’t really deal with how people deal with a death after it happens. It tries to deal with what a person confronting a serious or fatal illness goes through, stage by stage.

…always act out of love. 

She based her ideas on her observations of people who knew they were facing a fatal injury or illness. I suspect that patients go through something like what she describes in coming to terms with their own death before it happens. I suspect spousal caregivers go through something similar while their loved one still lives.

It’s pre-death–not post

But after six years of living with the loss of Jane–and talking to many other widows and widowers–the five stages concept operates as a comforting myth for those who have not experienced the loss of a spouse. It has little bearing on the reality of our lives after a husband or wife stops breathing. Even after we’ve accepted the death as real, it still hurts like Hell.

…people still think of it as reality.

But it is a useful thing for caregivers to understand on two levels. First, the patient does go through much of what the theory states. Where they stand in that process influences their attitude and how they deal with things. And we, as caregivers, go through those stages not only with the patient, but in our own minds as well. The problem is, we don’t often go through them at the same pace. That can create frustration on both sides.

Stage 1: Denial

Jane and I were both in denial for a long time. She wanted to believe her shortness of breath and loss of stamina can as the result of her slow recovery after the flu. I believed that, too. But we remained in denial even after her diagnosis with NET cancer. We accepted the rosiest version of things until the condition of her heart shattered all of our illusions.

…it still hurts like Hell.

And yet, part of me remained in denial until the day before she died. We need to understand the constant overlap of all the stages. Just because we get angry doesn’t mean we’ve left denial behind. Even when we reach the last stage, acceptance, traces of all the other stages remain. Death may resolve all of this for the patient. We can’t know that. But it doesn’t resolve everything for the caregiver. It compounds the issue with the bitter emotions of actual loss. But that is a topic for another day.

Problems denial creates

Denial can slow access to treatment. Because we kept coming up with what seemed reasonable reasons for what Jane experienced in the months after her battle with the H1N1 virus, we didn’t really worry about putting off seeing her doctor. Jane felt under pressure to make up the ground she had lost with her AP biology students. Pressure always gave her increased diarrhea and insomnia.

…the condition of her heart shattered all of our illusions.

A diagnosis six months earlier likely would not have meant much in terms of longterm prognosis in Jane’s case. But with a different cancer, it might have. I’ve seen many others put off dealing with symptoms to their detriment. Denial creates a kind of deadly inertia both patients and caregivers need to fight. I still wonder if we had gone for the heart surgery earlier if it might have made a difference–though I’ve been told multiple times it would not have. Denial of the seriousness of her heart condition did convince us that waiting would be OK.

Stage 2: Anger

Of the five stages, anger may be the hardest one to deal with. Anger is a blind emotion and causes us to lash out at those closest to us. I was quick to anger as a child. It made me so violent I considered myself a danger to both others and myself. I sublimate anger constantly and try to direct it in useful directions when I have to let it out. But the depth of anger is sometimes too great to control and it leaks out in unintended ways. I hurt people with some frequency when Jane was sick–and for a long time afterward. I cut people with my words without knowing it until someone pointed it out.

Denial can slow access to treatment.

Somehow, I managed to largely keep my anger in check where Jane was concerned. But I made clear from the outset that she could use me as a target for her anger at will–and that I wouldn’t return her anger with anger of my own directed at her. I used a kind of sleight-of-mind for that. I discovered that if I took the blame and apologized, even if I had done nothing wrong, it eased her anger. And I convinced myself that, much of the time, it was the cancer I was talking to and not the woman I loved. Not that I didn’t sometimes giver her cause for anger–and it horrified and angered me every time it happened.

Stage 3: Bargaining

I don’t know what kinds of bargains Jane made–or tried to make. I suspect part of her willingness to let her doctors study her was part of one of those bargains. Jane did not like strangers poking and prodding her under the best of circumstances. I know the scientist in her would not, however, have allowed her to do otherwise than she did. And our conversations showed me clearly what she wanted.

Anger is a blind emotion…

I do know I went into bargaining mode pretty quickly once we had a diagnosis. From my reading, I knew just how much trouble lay ahead of us. I knew we had one of the best oncologists in one of the best cancer centers in the world working with us. I knew we had access to the best cardiologists and surgeons in the world. But I also knew we needed miracles stacked on miracles.

Bargaining scars

I believe in higher powers, But we haven’t spoken since Jane died. A chunk of the anger I stored during Jane’s struggle rages in their general direction. To tell the truth, though, most of it gets aimed at me. I failed her. That failure places me in a special kind of Hell. My efforts did nothing but stretch out her suffering. My bargains didn’t work.

…we needed miracles stacked on miracles.

You can’t bargain with mindless cancers. You can’t bargain with mindless death. Consciously and intellectually, I know that. But emotionally… For caregivers, the emotional scars those bargains leave behind are significant. Losing them feels like a personal failure we should have found a way to avoid. That we didn’t scalds our souls. But that, again, comes after they die, not before.

Stage 4: Depression

Depression takes many forms–and caregivers, wrapped in their own anger and depression and the daily duties of the work, may not always see it in the patient when it arrives. And it comes and goes for them the same way the other stages do for both of us. I remember Jane’s reaction when I told her I wanted to take an extended leave from work to stay home with her first semester.

You can’t bargain with mindless cancers.

“Why? So we can sit here and stare at each other?” she said. Her voice was angry, but her words told me she was already depressed. Yet a week later, after our first trip to Dana-Farber, she was enormously upbeat and positive. A week later, she was screaming at me in a fast food parking lot. Honestly, I often didn’t know who I would be talking to from one minute to the next. Part of that had to do with her fluctuating serotonin levels. With a NET cancer patient, you can’t always be sure where the emotions come from. It complicates everything. But she also had the very real depression that goes with dealing with a fatal illness, especially in its late stages.

Roots and complications

For either individual, the illness shatters all the plans you’ve made together. It destroys all your hopes and dreams for the future. If all that didn’t depress you, outsiders would question your sanity or your commitment to each other.

It complicates everything.

Some people self-medicate under these circumstances. Jane and I, never heavy drinkers in anyone’s mind, essentially stopped drinking all together after her prognosis became clear. We both knew alcohol for the depressant it is. It would only make things worse. We both knew we needed clear heads for what we faced–and that any drug–even something prescribed–would hurt our ability to function rationally when we needed to.

Stage 5: Accepting death

Eventually, the patient accepts the reality of their own death. I suspect they get there earlier than caregivers do. Part of that is the need for the caregiver to stay positive no matter how long the odds are. I even managed to put a positive spin on telling Jane we were out of options and that in the morning we would take her off all the machines that were helping keep her alive. I think she was annoyed that she woke up for us to tell her what she already knew.

 It would only make things worse.

Caregivers need to stay aware of when the patient reaches the point of acceptance, even if the caregiver hasn’t arrived there yet. Patient acceptance creates subtle changes in the dynamic between patient and caregiver. You have to be able o look at the big picture in terms of what you know that they may not in terms of options and where they are in their care. But their needs and wishes need to guide you. The two things can create a real tension between you.

The end

I screwed this up. Jane told me two nights before she died that, despite her condition, she wanted to go home. I knew she was frustrated with the pace of her recovery. I knew she was tired of bed pans and feeding tubes and having others change her bedclothes. And I thought that was all this was. We’d been here before.

Caregivers need to stay aware…

But she could feel the end coming in ways I could not. She wanted to die at home, in her own bed, in our own room. By the time I knew what was going on, it was too late for her to do anything but die in that hospital bed. On the other hand, she might have lingered longer at home than there–and she wanted life over.

Lessons from the stages

The lesson for today, then, is this: Pay attention, both to what you and the patient are feeling at any given moment. Listen to what they are saying and what they are not saying. Know that you are not necessarily going to be in the same emotional stage at any given time. You need to give that due consideration in whatever you do.

…she wanted to go home…

My last, best, advice on this topic is always act out of love. Then, even if you make mistakes, you’ll have a better shot at living with yourself afterward. It still won’t be easy–but it’s all that has kept me even remotely sane since.

Gathering knowledge

Some patients want to know everything they can about the disease they are facing. They cruise the internet, join support groups, pepper their doctors with questions. Others don’t want to know anything. Part of that may be denial. Part of it may be fear. And part of it may spring from the knowledge of how poor information garnered from the internet can be.

A NET cancer diagnosis changes everything…

Regardless how the patient feels about information, caregivers need as much knowledge about the disease as they can get. Caregivers often become the patient’s best advocate. That means we have to be able to carry on an intelligent and informed discussion with medical staff at every level. Sometimes, that means understanding what a doctor is saying and not saying. Other times, it means educating people about the disease and drug interactions they may not have seen before. And sometimes it’s about helping the patient understand what is going on.

Knowledge for the advocate

For caregivers facing a rare disease like NET cancer, this is especially true. Unless you deal with a NET specialist, you will often likely have more knowledge of that illness than your doctor does. While Jane and I quickly fell into the hands of a NET specialist, none of the nurses in the cardiac ICU had ever heard of NET cancer before. They had a one page sheet designed to give them the background they needed, but I needed to fill in the gaps for them and, at times, the doctors on the floor.

Caregivers become the patient’s best advocate.

Six years after Jane’s death, most doctors still have never heard of NET cancer. Even many general oncologists have sketchy information at best. As Jane’s first oncologist said to us, “I’ve heard of carcinoid (NET) cancer, but I’ve never seen a case.” Her ego was small enough she had no hesitation in sending us to Dana-Farber where they had people who had more than heard of the disease before.

Dangers of ignorance

But that doesn’t always happen. Sometimes, the nearest specialist is a long plane ride away. Sometimes a doctor decides they can handle NET cancer if they just read enough. And sometimes, they think it works like any other cancer and decide they can cure it by traditional methods. So they set up a standard chemo or radiation regimen and move forward, not realizing those treatments do nothing for NET cancer.

…I needed to fill in the gaps…

Finding good information about NET cancer, while difficult, is better now than when Jane was diagnosed. For example, in 2010, the American Cancer Society had no real information on what they still call carcinoid cancer. Their failure to keep up with the name of the disease most now call NET cancer makes a search of their site more difficult than it needs to be–but at least they have information now.

Best of the best

The best, and most up-to-date, information for new patients comes from the Carcinoid Cancer Foundation. The oldest of the groups fighting NET cancer (founded in the late ’60s), they have extensive links not only to information on both basic and more advanced topics, they also provide a state-by-state listing of NET cancer specialists across the US. The NET Research Foundation also has good links for patients and caregivers.

But that doesn’t always happen.

Sometimes, however, the links on any of those sites prove daunting to a lay reader. We try to make things easier here, but the best site at talking in lay-friendly language is patient Ronny Allan’s Living with Neuroendocrine Cancer blog. Ronny has a real gift for putting the complex bits of NET cancer into language real people can follow effortlessly. He posts something new every few days. Sometimes, he talks about research. Others, he talks about his own experience. Both have value.

What patients think and feel

For caregivers trying to figure out how and what a patient thinks about, the latter pieces have great value. Even as well as Jane and I communicated, sometimes she baffled me. Sometimes, I knew I was talking to her cancer, not her. Other times–I’m still trying to decipher what she was thinking and feeling. Reading some of Ronny’s posts helps with that.

Ronny has a real gift…

The posts of other bloggers can help there as well. Understanding what a patient goes through–even at second-hand–can be a big help. There were things Jane simply would not talk about no matter how I approached them. And observation rarely does enough to explain the internal things a patient faces.

Power of knowledge

So critical piece of advice #2 boils down to this: Knowledge is power–and you need all the knowledge you can get. You can get some of that information by reading and some of that information by talking with the doctors who know something about the disease. The second of these is especially important because things are changing very quickly when it comes to our knowledge of NET cancer.

…I was talking to her cancer…

One of the online support groups, Dr. Liu’s Zebras, can help with that second part. They do an online Q&A with Dr. Eric Liu, a surgeon who specializes in NET cancer,  once a month. It’s private group–and you have to ask to join–but that piece alone gives membership great value. Another good group for this is NET Patients Sharing Knowledge & Experience. They are not a traditional support group, as they avoid posting anything that does not have a science knowledge or practical treatment experience piece to it. They are a forum for the latest information available on everything from the science to insurance coverage for treatments.

Keeping up with each other

But the most valuable pieces of information come from the patient you are supporting. We all like to think we know our spouses pretty well. But six years after Jane’s death, I’m still learning things about her I didn’t know. We tried to keep up with each other’s evolving thoughts and ideas. But conversation using words and body language moves slowly and can’t always keep up. Illness complicates things further, especially when the disease comes with embarrassing symptoms like NET cancer can.

…you need all the knowledge you can get.

I’ve written a post about the conversation every couple needs to have on a regular basis about severe illness, injury and death. But communication of every kind on every important topic becomes much more critical under these circumstances. A caregiver needs to really know the person on the other side of the equation to really do the job well. NET doctors say that when you’ve seen one case of NET cancer, you’ve seen one case. The same applies to being a caregiver. The better you know your either half, the better this is going to work.

Know your selves

All the medical information in the world won’t prove very helpful in your task if you don’t know your spouse and they don’t know you. A NET cancer diagnosis changes everything–and you need to talk about that together. And the patient, if they are going to trust you to make decisions when they can’t, needs to know you as well as you know them. Talk!

A caregiver needs to really know…

Do it by yourselves if you can, or get help if you need it, but talk about what you think and what you feel. It matters–both for now and for the future.