Sunday, March 26, 2017

When the Ghost of Cancer Interferes with Ordinary Pleasures

It happens so often for people with cancer. A remission ends and the cancer returns. Sometimes it spreads to other organs; sometimes it is easily contained. But the truth is that any patient who finds a return of the disease is going to feel crushed by the reality. That's a pretty devastating concept to wrap one's head around.

But what happens when people who thought your loved one's cancer had been successfully treated realize it's back? How do they react and what impact does that have on your loved one?

It starts with the looks of pity. Maybe the hair falls out again when chemo starts up. Maybe there are visible radiation burns. Maybe it's impossible to miss the surgical scars. People are shocked. Some are horrified. Some want to know what the prognosis is. Is your loved one going to live or not?

It's followed by disappointment. Or horror stories of what other cancer patients have been through. Or awkward silence. Or blame, as if cancer patients somehow did something wrong to get the disease.

The truth is many people don't know how to deal with someone else's disease. My mom once had a friend tell her, without any sugar coating of it, that she just couldn't handle people being sick. Given the fact that my mom was struggling with lung cancer and a host of other health challenges at the time, having a friend so bluntly reject her was incredibly hurtful.

And I've seen other relatives and friends have similar experiences throughout the succeeding years. I even recently heard a dear friend remark about how hard it is to go out in public, now that her cancer is back. This isn't a case of an overactive imagination. Your loved one isn't being overly sensitive. He or she is picking up on other people's very real discomfort.

As a caregiver, it's important to understand two things:

1. Your loved one will be seriously affected by the public reaction to his or her cancer. It will cause any number of reactions -- anger, annoyance, frustration, sadness, depression, disappointment, or even dismay. Whatever the reaction, it will take its toll on your loved one's psyche.

2. You cannot change human behavior with a wave of your hand, and you certainly can't force people to behave appropriately around your loved one. There will be loving and supportive people amidst the bumbling idiots and thoughtless jerks, but it still hurts your loved one to be segregated by cancer.

What can you, as a cancer caregiver, do to help your loved one through the difficult challenges of treating a returning or spreading cancer? Take action. Know your loved one's interests and find ways to adapt social opportunities to meet his or her cancer needs. It's still important for cancer patients to get out and be a part of life, but realize that some situations are just too emotionally overwhelming at times. Be proactive in planning adventures.

If the local coffee shop is no longer the welcoming place where everyone knows your name, it's time to go exploring. Plan trips to new places, to places where people don't know you or your loved one. Go to a museum, even if you have to push your loved one in a wheelchair. Take a boat trip down a river. Find a charming new coffee shop in another town and make the trip part of the adventure. Discover a new cafĂ© that serves Sunday brunch. Go to a park where you and your loved one can sit and enjoy the birds singing while you eat a picnic lunch. Go to the movies when the theater isn't crowded. Take a stroll on a quiet stretch of beach. Go to the aquarium (which is usually dark and has plenty of observation benches) and sit for a while to watch the fish swim.

Whatever you do, don't let this kind of thing determine what your loved one can and can't do. Don't let other people's inability to cope with your loved one's cancer deter you both from activities you enjoy together. Help your loved one continue to be a part of life, because tomorrow is promised to no one. Until that fat lady sings, keep your loved one focused on pleasure and joy by managing the environment. Keep hope alive.

Wednesday, March 22, 2017

Dear UnitedHealthcare

The other day, my dad received nine individual letters from you, informing him that the hospital where he has been treated for more than fifty years was no longer an approved provider as of April 2017.

At first, my father thought it was a mistake, a computer glitch. But as he read the names of each of the nine physicians no longer approved to treat him, his stress level increased. He began to worry about what was going to happen to him.

What if there was an emergency? Even if he went to the hospital by ambulance, there's no assurance his physicians could treat him, consult with emergency physicians treating him, or even do the follow-up care he has come to count on. And the hospital care he depends on would not be covered by his insurance policy. He'd have to go to another hospital for treatment.

This morning, he informed me that he was concerned that he had had too many health issues this year and last. Maybe UnitedHealthcare was trying to contain its costs by not allowing him to be treated at the hospital. What was he going to do if, God forbid, something happened to him?

And how was he going to replace all of these physicians with new ones? What if the rest of his physicians were also added to the list of "non-approved" providers?

Me? I know better. I did my research. It's negotiation time for UnitedHealthcare and the provider. In fact, UnitedHealthcare has a long history of using this tactic when things don't go well. What is wrong with that?

I'll tell you. Every time a patient is dragged into the negotiations by this kind of intimidating behavior, bad things happen. Not to UnitedHealthcare. Not to the provider. To the patients and their caregivers.

As a caregiver advocate, I have a lot of friends who count on good healthcare to stay alive. Friends who survived cancer and are in various stages of cancer management. How does this kind of negotiating tactic affect them? The last thing someone who is struggling with chemotherapy needs to hear is that he or she is going to be cut off from care without any explanation, all because UnitedHealthcare can't agree with the provider.

And what about all of the other people with UnitedHealthcare insurance...the elderly, like my dad...those recovering from surgery, in rehabilitation, in failing health...those with catastrophic illnesses like COPD, Parkinson's, or cystic fibrosis...or, worst of all, those patients now headed towards hospice care? What are they to do when they are already overburdened with serious illness?

I'll tell you what happens in those cases. Patients panic. Caregivers panic. They frantically contact their providers to find out what to do. Or, worst case scenario, they resolve not to seek treatment when needed, because they can't have their normal provider. They go without because the burden of transferring, as my father was informed he would have to do, to an "approved provider" is too much damn work.

So, UnitedHealthcare, let me give you a heads up. If any patient who is covered by your insurance policy is harmed as a result of your ridiculous negotiating tactic, it's on you. Be prepared for the onslaught of policyholders holding you accountable for the negative impacts on their health. Be prepared for the patients who suffer needless health problems because you scared the bejesus out of them, stressing them out at a critical juncture in their illnesses. Be prepared for the caregivers who line up to hold your feet to the fire for making their lives more difficult when they are already exhausted from caring for their loved ones. But most of all, be prepared for the families who lose loved ones because patients think they somehow brought this situation upon themselves. It's unconscionable that you used policyholders as fodder for your negotiations, tossing them under the bus because you cannot get the provider to bend to your will.

The moment you began to send those letters to your policyholders, informing them that their providers were about to be cut off, you abused your policyholders. You did actual harm, all because you wanted to manipulate your policyholders into pressuring their providers to comply. You could have explained in the letter that you were in negotiations. You could have told your policyholders you were working to come to an agreement. That would have been the honest thing to do. That would have been the honorable thing to do. You chose not to do that. Instead, you counted on that shock and awe to move things forward at the negotiating table. That was an unacceptable maneuver. Shame on you.

Wednesday, March 8, 2017

Why Keeping Hope Alive Is Critical

These days, with more advances in cancer treatments, survival rates have improved. But there is often a price to pay. Side effects can be brutal. Complications can be devastating.

Cancer attacks more than just the human body. It crushes the human spirit. The most confident person can be devastated by the loss of hope.

Doctors and nurses often treat the cancer patient's body, but not necessarily the mind. And yet, the mind is one of the greatest tools available in cancer management. How a patient perceives his or her cancer really does matter.

If a patient feels there is nothing to gain from treatment, it's unlikely that he or she will bother to:

-- Take medications appropriately
-- Eat as healthy as possible under the circumstances
-- Get enough rest
-- Avoid unnecessary risks to the immune system

Cancer is stressful. And when that stress builds up and becomes overwhelming, patients often surrender to the sense that it's futile to even try. It's easy to throw in the towel when you are in pain and unable to handle all of the horrible side effects. Patients often presume it's all about the cancer. But sometimes that can be a mistake.

There are so many issues that can crop up in advanced cancer management, when the options are fewer and the regimen is rougher. If a patient is undergoing chemotherapy on an ongoing basis, dehydration, infection, neuropathy, and steroids are just some of the complications that can wreak havoc with the human body. After a while, it's hard to tell whether it's the cancer causing the problem or the treatment.

If a patient loses hope and gives up, the battle is over. People who are pessimistic about their chances won't bother to look for solutions. They won't tell their oncologists about new symptoms because they don't want to know their cancer has advanced. But what if it isn't the cancer?

What if the side effects are manageable with the right diagnosis? What if there are options if the oncologist recognizes what is really causing the problem?

I remember sitting in an oncologist's office with a loved one who had just been given the prognosis about cancer. How many people survived this kind of cancer? What were the chances she could come out on the winning side of the equation? The doctor's response was simple. While many people didn't survive it, there were people who did. Why couldn't she be one of the people who survived it?

That little sliver of hope at the right moment in time made a difference. She lived much longer than the majority of patients with the same diagnosis. We learned to manage the symptoms, to address them as they came up, to focus on comfort in order to maximize quality of life. Cancer patients need to feel they still have a reason to get up in the morning. They need to believe there is something worth doing. They need to believe they still have a chance to grab the brass ring.

I have been blessed over the last couple of years in unusual ways. I lost two family members to cancers that were aggressive. But as I grieved, a friend of mine beat the odds, and in doing so, she taught me that hope is a critical component of any good cancer management program. After such a struggle with pain and debilitating side effects, she is still here. She teaches me what courage, fortitude, and perseverance are all about. And above all, she has shown me that we should never turn our backs on hope. Because she believed, she searched for answers. She stayed on top on the issues. She fought for what she needed. She is the new advanced cancer survivor, using cutting edge treatments that have kept her alive against all odds. It hasn't been easy. This isn't some kind of cake walk for her. She fought tooth and nail to keep going. She believes that she still has something to achieve on this planet, so she finds a way to get it done. We've come to understand the power of love, faith, and hope in this life touched by cancer. Cancer didn't make her a superhero. Her reaction to cancer did that. And because she did the hard work, we are inspired. We have learned that hope matters in everything we do. Love connects us. She's told us so many times that our being there for her banishes the loneliness and isolation that cancer creates. Hope pushes us to try harder to help her, to lift her over the obstacles that stand in her way. It feeds our faith that there is something good for her on the other side of that wall.

This is how new cancer treatments come to bear fruit. Those extraordinary people who endure against all odds teach cancer specialists that those baby steps forward can become giant steps. It's not enough to have strong medicines or powerful machines to attack cancer cells. Hope is the elixir for the soul and it opens the door to even the smallest little bit of opportunity. It is what creates quality of life for those survivors who believe they have a chance. And because they believe, more and more people are surviving what was once not survivable. Someday, cancer will be a thing of the past. Who's to say my friend won't be there to march in that parade?