I met Debra Madden 9 months ago, at a conference sponsored by the Drug Information Association where I met a number of cancer and rare disease advocates. She is a remarkable person whose own journey through the world of cancer twice as a young adult has shaped her advocacy to help others understand the diagnostic challenges and lifelong implications of young adult cancers.
Debra maintains a blog where she interviewed me and placed our conversation in the context of her own experience. It's good reading. You can find Debra at Musings of a Cancer Research Advocate. She's also generous with her insights and helped influence my most recent Huffington Post Blog on the challenges that many people face in obtaining a diagnosis when the symptoms are uncommon. She's a champion for cancer research and a wonderful human being.
My latest Huffington Post blog deals with delayed diagnosis and the fact that soon every cancer is likely to be considered "rare." Check it out!
Eric is a really beautiful child, and I say that not because I adore his mother, but because he's really beautiful, with an ear-to-ear smile, dimples, sparkling eyes, and a thick head of hair that stops just above his eyebrows. His parents married when they were both in their 40s, so he's a real miracle baby who is surrounded in a total cocoon of love from his extended family and his parents' friends.
He just turned four years old, and he'll be in the hospital for the next month, in treatment for over two years, and watched for the next 25 years. Eric was just diagnosed with lymphoblastic lymphoma.
When Eric's mother spotted the little lump on his collar bone, she jumped right on the situation, trusting her instincts. She had him in the doctor's office that day, and before she could blink, the family was on a 48-hour odyssey that ended with him in the emergency room. That was two weeks ago. Neither he nor his parents will be returning home for a few more weeks, and after that the protocol for treatment will be rigorous and taxing for all.
Eric is in one of the world's best children's hospitals, and the staff are making it as pleasant as they can. Yet childhood cancer is what it is. There's no sugar-coating the needle sticks that make him scream "Mommy, Mommy, help me!," or the medicines that are squeezed into his mouth, or the PIC line in his arm that makes it hard for him to roll over. Or the blood clot that turned that arm blue. Or the dramatic decline in his white cell levels that has caused him to regress and become whiney.
But then again, Eric is lucky. He's young, his cancer is very curable (despite the fact that the scans show places it is trying to get a foothold throughout Eric's little body, his parents are devoted and attentive, and maybe he won't remember the trauma when he's older. Maybe . . . . Eric's family is fortunate too: he'll survive this, and so will they, even though life will never be the same. Yet the stress is already creating a new normal for them, and they know it. They're learning that:
Eric and his parents are only starting down a long path. These aren't the only issues they'll face along the way, but hopefully they now have a little more reassurance that they'll get through this with more courage, self-confidence, and resilience than they realized they had when they first landed in the emergency department.
This article was just posted at Huffington Post, for caregivers who have lost themselves in the process of caring for a loved one. It's a common phenomenon, and one that takes deliberate planning to overcome. May this article find you ready to heal in 2014. Best wishes for the New Year and healthy healing, no matter where you are in the caregiving process:
We all know that hair stylists hear everything--the good, the bad, and the ugly--from their clients. Today my stylist shared with me her experience talking with hundreds of patients and caregivers about things that patients undergoing chemo find helpful. The list is stunning in its creativity! You may already have your own ideas, but it can't hurt to take a look:
A couple of these items can also be useful for caregivers themselves, like the journal and pen, and perhaps the kaleidoscope or drawing ideas. Give them a try, and let me know how well they're received or if you have additional suggestions that are even better.
My hair stylist, who is called The Chemo Fairy Godmother, sends the list to caregivers with her best visualizations of life after cancer!
Cancer isn't a political disease. It doesn't ask your party affiliation before it strikes. It's indiscriminate. It could strike anyone; one in two men and one in three women, regardless of political affiliation, will be diagnosed with some form of cancer during their lifetimes. Three quarters of households will find themselves caring for a cancer patient sooner or later.
Now the same Congressional Republicans who were willing to cut cancer research to the bone through sequestration are, after closing the government down over policy differences regarding the Patient Protection and Affordable Care Act, say they're willing to restore funding to cancer patients in return for virtually gutting the law that un-insured or under-insured cancer patients are counting on to save their lives.
What's wrong with this picture? The words "Patient Protection" in the law's name seem to have been forgotten. The law will give everyone access to preventive and diagnostic services that can further cancer prevention, early detection, and survival while ensuring that no one is denied coverage as a result of pre-existing conditions. It will give children coverage under their parents' policies until age 26 — a provision that's crucial in an economy where college gradutes are having problems finding employment. It will help even moderate-income households to fund cancer care and reduce the odds of personal bankruptcy for medical expenses (which has been one of the leading causes of personal bankruptcy for years).
In terms of the government shutdown, thousands of people depend on the National Institutes of Health (NIH) for both the clinical trials that NIH runs and for registering into the clinical trials that are conducted at cancer centers across the country. Why is the House of Representatives willing to gut these budgets during normal times and yet willing to use the restoration of funding as a wedge for getting their way?
It's time for cancer patients and their caregivers nationwide to speak out against such hypocrisy. We need to demand that (i) the government be reopened, (ii) the NIH budgets be restored to pre-sequester levels, and (iii) health resesarch into cancer and other life-threatening diseases be increased. Such expenditures are not discretionary. They're as critical as any other government service, and it's up to every one of us to speak out on their behalf.
A study conducted by researchers fron Dana-Farber Cancer Center and published in 2012 in the New England Journal of Medicine reported that 70% of patients with end-stage lung cancer in a national sample and 80 % of those with terminal colorectal cancer did not report that they understood that the chemotherapy they were receiving was unlikely to be curative. These facts suggest that they and their caregivers had probably not talked with their doctors about their prognosis or had not understood what the doctors had said.
Having such conversations, about the likelihood of death, isn't easy for patients, caregivers, or physicians. Yet they are critical to setting appropriate expectations and — even more importantly — to allowing everyone concerned to give the patient the best possible quality of life in the time that remains. This means reducing the suffering that often accompanies chemo, providing palliative care to maximize patient comfort, and creating a setting in which patients can say good-bye to their loved ones, leaving them with some sense of positive closure.
As Deborah O's husband told me, creating a permanent good-bye message, whether in writing or on tape (audio or video), doesn't hurt anyone. If the patient survives in the longer term, it's something to smile about. If not, it's something to reassure the caregiver and provide a source of strength during the healing process.
If you find yourself in a quandry about your loved one's prognosis, don't hesitate to plan for alternative outcomes. Even during life, we often don't tell each other how much we care; you'll never regret having done so, no matter what the outcome.
No cancer patient or caregiver wants to say good-bye. It feels too much like giving in, and giving up, and the pain of doing so is indescribable. Yet so is the hurt left behind when there wasn't time to say good-bye.
Deborah and her husband knew from the moment of her diagnosis with mucinous lung cancer, nine months before she died, that surgery wasn't possible and that the odds weren't good for her. Only 56 years old, with four grown children and one only 12 years old, she had lots to live for. Her husband took the family off to a beach hideaway every month during her illness, so they'd have precious memories, they each cycled through the family homestead for visits, and she fought ferociously for survival.
Unfortunately Deborah reacted poorly to chemothereapy, and they were told that it wasn't working something like four or five months later. She was in constant pain, very weak, and nauseated 24/7 from the chemo. She and her husband followed medical instructions carefully, participated in support groups, investigated palliative care, and prayed. They didn't say good-bye, because it wasn't in their DNA to give up. They couldn't allow themselves to acknowledge that there wasn't anything more that their medical team or God could do on their behalf.
They didn't call in hospice until about five weeks before she died, and at that point Deborah was barely conscious or able to communicate. The hospice nurses worked as individuals, rather than as a team, and no one gave them advice about handling the dying process in a way that would make it easier for those left behind. The nurses didn't anticipate the need to prevent bedsores until pressed, and they didn't suggest ways to make good-byes happen.
Now her husband is alone, a single father to their last son. He can't fix the fact that there weren't any good-byes. He's torn the house apart, hoping to find a note from her, or a card, or a message that he can hold onto. He's desperate to talk with her again. But he's found nothing.
The morals to this story are twofold:
1. As he himself said, it's better to have the good-byes taken care of, regardless of whether it's on tape, or written, well in advance and in a form that allows family members to refer back to them over and over. If you don't need them, so much the better, but if the worst happens, there's a soothing resource for those left behind. He described the best case as resembling the Rolling Stones' good-bye tour, which has happened over and over again, and is just as good every time.
2. Call in hospice early, once you get the message that treatments aren't working. (You can do so within six months of anticipated death.) Then insist on their having a team leader and functioning like a team, instead of coming one by one without coordination. Insist that they prepare every family member for what's coming, including your patient, and that they provide coaching about how to handle the good-byes.
There's nothing wrong with having faith and praying for survival; in fact, many people find it invaluable to their cancer experience. Yet preparing for the contingencies and doing so early enough to work through your feelings and avoid aftershocks is a critical healing tool for those left behind.
Recently there has been a nearly constant barrage of advertising on television from a for-profit hospital chain claiming very high cure or remission rates for "advanced cancers." These ads are appealing, featuring human interest stories that touch your heart and--if you're a patient or caregiver for a patient with such a cancer--may induce hope where it hasn't existed for some time. My message to you is BUYER BEWARE!
There have been several press articles that have revealed that this organization "cherry-picks" the data it uses and the patients it accepts. In other words, the data they are featuring aren't necessarily comparable to the data base of the national averages to which their survival rates are being compared. In addition, there have been a number of patients who were rejected for treatment because they didn't have an insurance plan or personal resources to pay enough to satisfy the organization's financial standards, or because their cancers were so serious that the odds of helping were limited. Cherry-picking means that they chose which patients to take and which patients to include in their comparative data. At a minimum, this practice is deceptive, or worse.
I have to admit that I haven't had direct experience with this organization or with patients they have treated, but the press coverage about their practices has been credible and concerning. Please don't let your sense of urgency to find a miracle cure let you be taken in by a healthcare organization that is driven as much by money as by the cause of healing you or a loved one. Make certain that their claims are legitimate, that their comparisons are valid, and that their physicians have the track record that you would want. Make sure they carry the important certifications by the National Cancer Institute. Search the internet. Ask around. Don't be taken in.
Every cancer patient deserves the respect to be safe from misleading advertising claims. Today most hospitals are advertising; healthcare is a competitive world, and advertising is an important promotional tool. But don't be taken in by false claims. Most likely, claims that look too good to be true are too good to be true.
While attending the Drug Information Association's annual meeting in Boston this week, I learned of two important resources that can provide important "expanded access" to scarce therapies for "compassionate use." For some patients, after traditional therapies stop working or for rare cancers where therapies are limited, there are two resources that may be able to help. These are generally accessible through a physician's inquiry:
The US Food and Drug Administration has an expanded access program that may provide access to an investigational drug outside of a clinical trial to treat patients who have serious or immediately life-threatening diseases or conditions with no comparable or satisfactory alternative treatment options.
Idis Pharmaceuticals has a managed access program that is intended to help patients who have run out of treatment options in their own countries. Idis is a British company with a second headquarters in the U.S. Through this program, patients can access treatments that are still in development and may or not ever be approved but may have medicinal value for a vary small population. They also address access to drugs that have been approved in one country but not another; are an alternative to a discontinued drug; are used off-label in some countries; or are experiencing serious shortages. Idis may be worth a try for caregivers who feel they've exhausted traditional treatment options.
Consult with your medical team to find out whether these resources offer options, either for an investigational drug or for off-label treatments. I always caution people to ensure that they're fully informed about empirical evidence that the treatment works and about potential risks and side effects, but these channels are worth exploration if done through a physician and with eyes open.
One of the challenges that may make it hard to heal after a loved one's death is the promises the caregiver may feel he or she made during the patient's final days.
Joan was traumatized by her young husband's rapid decline and death from a fast-moving and rare renal cell carcinoma that had already metastasized by the time it was found. At the time they already had one child, and Joan was pregnant with her second, a miracle baby conceived the last time they were together sexually, while she was using birth control and he thought he was sterile.
During an entire month while he was in hospice, her husband gave her instructions for things he hoped she would do for the children after his death. Joan took notes dutifully and committed to do everything she had promised.
Fast forward three and a half years: Joan is ready to get on with her life, having redefined herself as a working single mother. She also realizes she needs to relocate to a more urban setting where she will find better resources for her two intellectually gifted children. She played out all the options she might pursue, but for some reason, every logical avenue was reaching a dead end before she even tried to pursue it.
So I pressed to explore the blockage. "Your resume is great. Your ideas are terrific, and your network should be helpful. What's stopping you?," I asked. We were talking by phone, but I could tell she had started to cry. "I promised him I'd stay here to raise the kids," she explained, "so I can't leave, even though it would be best for them." I shot back at her that she had probably already fulfilled her commitments that she made to him, and reminded her of all the reasons she had given for why she needed to move and get back into the workforce in a more substantive way.
Then she started to laugh and explained: She had already asked the minister who performed the funeral several years before to do it again, for her benefit, because her state of shock after her husband died had erased all recollections of the experience. He agreed, and after the minister left, she pulled a shovel out of her car and dug a hole. She literally buried the dictated notes from her beloved husband in the hole, with his remains. Now she's ready to move on, ready to thrive.
Joan has started a new business that is giving her positive feedback professionally and an income source that will still allow her to manage her calendar to adapt to the kids' schedules. She has found a wonderful school for her gifted children, even without relocating. She's thrilling at the new balance in her life and knows now that she'll be able to handle whatever comes along. She has demonstrated to herself that she's capable, strong, and endowed with the sound judgment that she'd forgotten about when she lost herself in the critical job of caregiving.
So . . . if your own healing is reaching a blockage after several years, look at the factors that might be holding you back. You're alive, and you need to live that life for all it's worth. The moral of Joan's healing story is: Go for it! The rest of your life is ahead of you.
I talked recently with an experienced nurse (we'll call her Amy) who has been caring for her boyfriend. We'll call him "Boy." Boy is in treatment for a pretty debilitating and painful cancer at a hospital far from home, so she left her job to live with him at a Hope Lodge far from their home. He's been heavily drugged for his pain, and he has been exhibiting such a level of anger — taken out on her — that she's had to exit, and go back home. (When your loved one threatens to call the police to throw you out, it's not a subtle signal that it's time to leave!)
The issue of anger aimed at caregivers is more common than you'd think. In Amy's case, it may have been triggered by the pain drugs he was given in quantity by the medical team. In other cases, the person with cancer is just angry. Angry at the cancer. Angry at the world that this has happened. Sometimes even angry at himself. That kind of anger could also be one of the early stages of denial and reflect an inability to come to grips with reality.
The reality is that cancer happens. There's not always a reason or explanation. It's not a fair disease. And we all, when diagnosed, need caregivers. They didn't cause the cancer. They didn't cause the pain. And they aren't responsible if it's not going away.
If you find yourself in this kind of situation, where the person for whom you're caring seems to be taking it out on you, there are a few things you might want to do:
Caregivers who are the most successful are those who care for themselves, respect their instincts and judgment, and know when to seek out their own support resources.
I had already heard from many survivors and caregivers and seen for myself that art projects served as a valuable healing tool. Their immersion in an intense creative project (painting, doing mosaics, engaging in arts and crafts, writing, and so on) focused their energies on something outside of themselves and their cancers. These activities relieved them of the pressures and the mind-spinning issues and decisions that arise in the throes of daily treatment. Such projects gave them something creative that converted their energies into a tangible positive form they could hold onto and revisit day after day. The outputs and the process of creating them helped remind these folks that they could be hopeful about enjoying life beyond cancer.
Arts and crafts initiatives at Boston's AstraZeneca Hope Lodge Center engage the guests in such projects in a setting where they are each working on their own project, but are sitting at tables with others who are similarly engaged. Particularly striking to me has been the positive nature of many of the themes that people turn into artistic forms. Most are positive and uplifting — a sunrise, a mountain or ocean vista, a bird, a blue sky with only a few white puffy clouds, a soft cuddly animal.
People who didn't ever think of themselves as artistic or creative produce pieces that inspire them to recognize newly discovered talents. In addition, all appreciate the sense of community, the sense that all of us are looking beyond cancer and that none of us is alone.
I recently had the opportunity to see a performance by the Shanghai Cancer Rehabilitation Club. This club helps cancer survivors to engage in drama, story-telling, song, dance, and other rhythmic physical activity (much of it based in the principles of Guo Lin Qigong) as a complement to their traditional cancer treatments. All of the performers were cancer survivors who had found these kinds of activities useful in discovering their hidden talents and accelerating their healing.
Whatever the tack you and a loved one take toward your own healing, you'd do well to consider engaging in new kinds of activities that will allow you to discover talents you have never before known or exercised. Healing requires a variety of strategies, and many people find that these kinds of creative endeavors help them restore body, mind, and soul in a complementary way.
I received a message the other day from Jada, a caregiver who lost her father to pancreatic cancer 3 months ago. She and her eight-year-old daughter had slept in the floor of his hospital and hospice rooms for 9 weeks between his devastating diagnosis and his death. She was devoted to him, and she described to me how she was writing and painting as part of her healing process. Her work is extraordinary (see http://www.jadagabrielle.com/), and the way she is using it to further explore her relationship with her late father and to keep his memory fresh while doing her own healing offers a role model for us all.
I'm sharing, with her permission, the first four stanzas of a poem she wrote in his honor. I hope it brings you as much comfort and inspiration as it brought me. It's entitled Gifts of the Princess, in honor of the Princess Margaret Hospital in which she cared for her father, and it reflects her heritage as a representative of indigenous people in Canada:
in princess margaret I found hidden corners
where little bits of peoples hearts
had fallen off and collected over time
you left a piece of your heart there
so I peeled off one of the hard layers of my own
massaged them together
and tucked them neatly in the stairwell
where someone else could add to the pile
or take from it what they need
in princess margaret I heard whispers so short you could sweep them up like dust
if you weren’t paying attention I’m proud of you, Jada; I’m proud of you
the princess whispered little comforts
I know the season is grey right now, she said
and when you least expect it
colours will be bright again
and it won’t hurt your eyes to see
the light change
I found a teacher in the princess
a natural teacher born from quiet and stillness
like we might learn about the salmon
by our teacher the river
learn about the lichen by watching the caribou
the teacher took my hand
led me along forest paths
brought me to beaches
guided me to our ancestors
princess margaret slowed the world down so we wouldn’t
race past and miss the garden
she slowed down the days so we could
each of us
take a good, long look at each other
dig in the dirt of ourselves
uncover the strength of our roots
the promise of a springtime garden
it’s winter she said
it looks bleak on the top layer of soil
but after the thaw
flowers always come back
In sharing this poem with my visitors, I hope that the peace that Jada is discovering during her writing and painting will be catching to anyone who reads this and is in search of comfort and healing.
I met a woman last week, Jim's wife, who described herself as a "failed caregiver." Her husband died 7 years ago after fighting a terminal lymphoma diagnosis for 9 years. When I asked her why she feels she failed, she said, "Because he died and I lost the love of my life and my best friend."
Jim's wife had some background in immunology and pathology, and she had been an all-but-dissertation Ph.D. researcher scientist. She doubted the original diagnosis because of his symptoms and fought to prove that he was receiving the wrong treatment, but the medical records weren't complete and she couldn't access the original pathology reports. In hindsight, she feels she was right, but can't prove it, so she remains angry, and it has seeped into disappointment at herself.
Research with the caregivers for the book suggests that there is no such thing as a failed caregiver unless that person has been unengaged, uncaring, or simply not present. Jim's wife was highly engaged, to the point of putting her professional life on the back burner, and she was a fierce "pit bull" advocate on his behalf. But she couldn't "fix" him, and neither could his medical team. That was an unfortunate reality.
Hopefully she'll find a way to redeploy her skills and talents into an activity that both capitalizes on her expertise and leverages her passion to improve cancer research. Only then will she feel she's making the kind of difference that she only wishes she could have made for him. It won't bring Jim back, but it will help save other lives and bring back some sense of pride for what she was able to accomplish on his behalf.
Pain relief is critical to preserving the quality of life for the person fighting cancer. It is also a medical specialty of its own, so don't assume that your oncologist is necessarily up to speed about pain control or will automatically take pain issues seriously.
Dee, about whom I spoke on October 3, 2012, was diagnosed with stage 4 lung cancer, with an aggressive mucinous adenocarcinoma, a cancer that doesn't have a surgically operable tumor but rather affects the fluids and lining of the lungs. She's been in constant pain that's been only marginally controllable. In fact, her husband says her steady-state pain level hasn't been below a 5 or 6 on the standard 10-point scale for months.
Recently she was hospitalized at a major cancer center for a lung embolism. While there for treatment for that crisis, they asked to see a pain specialist. He prescribed strong and frequent doses of three different pain relievers. Apparently there are multiple channels for pain, and it would take multiple drugs in large doses to control them all, but none of her physicians had yet gone that far in trying to make her more comfortable. The change in her meds has now brought her steady-state pain level down to a 3 on the 10-point scale, a huge reduction.
The Moral? Don't wait to ask to see a pain specialist. This and other forms of palliative care are critical ingredients to ensuring the quality of every patient's life. The earlier you ask about it, the better for your loved one.
I introduced you to Sally in Denial, Chapter 2, on October 21, 2012. She's been caring for her father-in-law who had terminal cancer and a family in complete denial. Well, he died just before Christmas. The family remained in denial throughout his final weeks, to the point where they didn't call hospice until a few days before his death and even then they refused to initiate palliative care (for relief of pain and anxiety). They even revived him several days earlier when he was in the process of dying. They wouldn't give him the morphine that had been provided to make him more comfortable, and their denial was so strong that Sally had to sneak it to him when she was alone and overseeing his care.
Now he's gone, and pain-free, but Sally feels the hole in her life more than anyone. She insists that the dying process should have been about him and making him more comfortable, and not about those who couldn't face being left behind. She's firm and strong in her convictions and only wishes she could have done more to enhance his comfort in his final days.
Instituting palliative care very early in treatment can keep the person with cancer more comfortable and relieve anxiety, even when the prognosis is positive. When it's clear that the course of the disease is irreversible, calling hospice earlier, rather than later, can help the family overcome its denial and prepare for their loved one's death in ways that reduce the burden on the person who is dying and make healing easier afterward for those left behind.
My interactions with interviewees and friends who are dealing with relapses or surprising new metastases suggests that caregiving is rarely any easier the second time around. In fact, the stresses may be even more severe, especially for those who have a history of losing family members and close friends to cancer.
Their commentaries suggest that they are even more likely to resort to motoring through, on automatic pilot. Even if they practice the "one normal pre-cancer activity a day" philosophy, it may not be enough to manage their stress and prevent a cascade of physical symptoms, especially after treatment is completed. As Carl's wife said, "Now he is once again 'safe' - at least for a time. So I can be the sick one. And I am finding it a relief. . . ."
The total physical crash (complete with aches, pains, fevers, headaches, insomnia, and infections) is one likely post-caregiving scenario. Another (more attractive) outcome could be seeking an outlet by talking with your social worker, therapist, or primary care physician about more dramatic stress relievers, whether activities or medications. Even if your best stress reliever is meditation, or talking with your best friend, do something additional the second time around. The question isn't whether you'll get through the caregiving experience--the question is whether you'll get through the consequences of repeat caregiving. Just ask Mike's wife: she's been his primary caregiver for incurable multiple melanoma for over 20 years and has seen him through three bone marrow transplants. Some days going to the gym is her stresss reliever, and on other days it's just folding laundry. But her commitment to keep something normal every day is paying off, for him and for her.
You can learn a lot from friends who are working through a terminal cancer diagnosis and doing their best to cope with it. Each of us knows at least one person who is in that situation. Some of them remain muted, while others celebrate every day they have and wring every ounce of vigor out of it.
My friend Robbi is one of those folks. I met her one day at Hope Lodge, and we bonded instantly. She's sperhaps the most vibrant person I know.
She's had a couple of professional incarnations, one as a modern dancer and her current one as an attorney. Her persona is bright, energetic, and hopeful, even in the face of a combination of metastasized stage 4 breast cancer and simultaneous multiple myeloma. Despite bouncing back and forth between bouts of rigorous treatment away from home and short periods of normalcy when she can return to her busy life, she's always "up." She's always optimistic. She always finds ways to make others laugh. And she never dwells on the pain and nausea from her latest new (often experimental) treatment, or on her questionable prognosis. Her mission is to bring light into others' lives, and she does that every day. Her goal is to be able to live with her cancer, to co-exist with her enemy and make it a friend, since she knows she may never beat it and has to manage her own expectations.
I've learned a lot from Robbi. Her vigorous pursuit of life is something to emulate, and her spirit is an inspiration to all of us who are fighting on her behalf. To know her is to love her.
This is an article that was picked up in numerous publications and websites
nationwide. It may be useful to people concerned to learn how the election
will affect the future of ObamaCare and their access to appropriate cancer
During their lives, one in two men and one in three women will hear the dreaded words, “You have cancer.” No matter their political persuasion, the 2012 election means that cancer patients and caregivers will benefit from full Affordable Care Act (ACA) implementation. Every American will soon have access to:
Implementation mechanics are still being developed by both states and insurance carriers, so much remains to be defined and communicated over the months ahead. Yet caregivers for cancer and other serious diseases can now focus on less on coverage and more on supporting patients day-to-day during treatment and maintaining hope for a disease-free future.
Two uncertainties remain that are important to cancer families as Congress confronts the need to agree on “fiscal cliff” deficit reductions. Mandated budget cuts that are scheduled to take effect January 1 if Congress doesn’t reach prior agreements would jeopardize Federal (National Institutes of Health) funding for cancer research, clinical trials, and breast and cervical cancer screening programs for low-income, uninsured, and under-insured women. In addition, action is still needed on adequate reimbursements to office-based physicians who administer treatments covered by Medicare Part B.
In spite of these two uncertainties, a sigh of relief is timely and appropriate for cancer-affected families. Their focus can now be on managing their loved ones’ treatment processes, supporting them in their day-to-day living, and maintaining their hope for a cancer-free future. These focal points are the core of what effective cancer caregiving is all about.
This is an article that has been picked up in the press but may be helpful to you as the
holidays approach. Thanks to Kathleen Bond, 20-year caregiver, for her inputs.
Having cancer or caring for a cancer patient in the family is hard, but cancer during traditionally happy holidays is even harder. It’s a time when each family enjoys traditional shared activities usually characterized by good food, drink, and company. Yet how can you carry out these traditions when you’re in the throes of cancer treatment or even dealing with the aftermath?
The most important message from cancer caregivers who have worked through these challenges is to seek normalcy, no matter what the patient’s prognosis. It may sound counter-intuitive, but it’s profound. It all stems from the issue of control.
Throughout the cancer care process, both caregivers and patients experience a fundamental loss of control. On some days, it may feel as though there is nothing left of the “good old days.” They describe their quest for normalcy ― for moments of P.C. (Pre-Cancer) life― and their feelings that every aspect of their lives has been turned upside down. They’re less available than usual, and even when available, they may be feeling depressed, anxious, or pre-occupied. Perhaps worst of all, their friends and relatives often don’t know what to say, or do, to help.
The combination of these factors can make the holidays feel like a particularly sad and lonely time, and it might bring the temptation to mourn what’s been lost. But cancer caregivers recommend that you do just the opposite ―that you try to maintain a few of your past traditions, social connections, and day-to-day activities in the interests of being able to celebrate what you still have.
So . . . exactly what does this mean? Pursuing normalcy means doing four things:
Keep It Festive
As tempting as it might be, don’t ignore the holiday. Instead, find a way to put a smile on your and your patient’s faces. There are several things to try:
Keep It Simple
Caregivers are often so tired and stressed when the holidays come that even the idea of all of the traditional holiday activities and “fixings” can feel overwhelming. This is an important time to focus on simplicity; don’t even think about buying or doing too much. Only do the part of the holiday that matters the most for you and your patient. That means:
Keep It Social
Remember that the real meaning of the holiday is togetherness, whether that means gathering together family members or getting together with friends. Family and friends bring normalcy.
There are two reasons for you to let others help. First, the patient needs friends, now more than ever and especially during the holiday season that represents togetherness. Too many people are afraid of cancer ― it’s not necessarily that they think they can catch it from the patient, but they don’t know how to talk to either of you, so they may shy away. Encouraging friends to stay close reminds you of normalcy.
Second, no caregiver knows how long the cancer caregiving experience will last. It can last for a few weeks or for over 20 years. You may well need friends and their help a lot later in your caregiving, especially when you get caregiver fatigue.
So make sure you reach out to friends and family. If invitations to you both dwindle, invite others to your house. Sometimes friends don’t want to intrude on your privacy, so they stop inviting you out. Make it clear to them that you’re determined to maintain your social connections, even if the visits are shorter or closer to home.
Keep It Positive
Cancer disrupts your whole life, and sometimes it’s hard to remember the good things, the things you still have. For Carl, that meant learning how to swim even after one leg had been amputated, because he loved swimming almost as much as he loved his wife. For Mike S’s wife, it was making sure that the family still got together for each holiday and that they continued to build strong traditions, even though he was fighting terminal pancreatic cancer. For Artie’s daughter-in-law and grandchildren, it was about continuing to leave cookies and milk for Santa Claus. These things helped families to get past focusing on what they'd lost and to create new memories centered on celebrating and savoring what they still had.
Finally, if you’re dealing with the aftermath, following a patient’s death, and you’re wrestling with how you’ll get through the holidays, be willing to change family rituals. Consider focusing the holidays around family and friends in a new setting. David’s family had had a ritual about Christmas, and after he died, his parents stopped doing Christmas on the east coast and started doing it in California with their daughter. Another caregiver scheduled a family trip over the holidays, so that the patient and his or her loved ones could be together in a stimulating and new environment that would give them lots to see, do, and talk about other than cancer.
Many cancer patients live long and happy lives, well after their initial diagnoses. Holiday periods nourish their spirits and remind them how much they have to live for. Family caregivers can help lengthen their lives simply by reminding them of normalcy and reducing anxiety. They can do that by celebrating holidays with zest that keeps things festive, simple, social, and positive.
Chapter Thirteen of the book ("The Aftermath") offers some moving and inspiring stories of dreams, visions, and almost supernatural events that caregivers experienced after a loved one's death. Some of those stories were included in the book, but others just need to be told in full in the words of the caregiver directly.
Patrick's wife shared an intimate story of his premature death, and I wanted to share it in the hopes that it will bring comfort to another reader:
Patrick was characteristically busy that fateful week in September: water-skiing with the family on Sunday, piloting a small plane to Houston on Tuesday for a meeting, and sitting on the bleachers with me to watch our son’s soccer game in addition to spending regular hours at his busy Nephrology practice. After a brief round of golf on Thursday evening, Patrick complained of a headache and, uncharacteristically, made an appointment to be checked by his internist the following day. That’s when the brain tumor was discovered.
I was the only one in the MRI room with Patrick later that afternoon when his heart and breathing stopped. A physician myself, I did what doctors do: I called a Code Blue and began CPR. Then I stood watching as a team of doctors, nurses, respiratory therapists, and other emergency personnel quickly converged and began working to restore Patrick’s heartbeat and breathing.
Amid the noisy, frantic activity, I became aware of Patrick standing above his body. I felt and saw an intense light radiating from behind him. I sensed Patrick’s intense desire to leave and his profound sadness at abandoning his family. I spoke without realizing what I said, “We’ll always love you . . . We know you love us. Go to the Light . . . We will be alright. Everything will be alright.”
I felt Patrick’s gratitude, joy, and love as he melded into the Light. So I knew the moment when he “died” . . . our last shared secret. The doctors succeeded in restoring Patrick’s heartbeat and transferred his body to the ICU where he remained for the next 24 hours before we took him off life support.
Connecting with Patrick as he left this earthly life was a gift that gave me strength and courage during the saddest days. Today I smile when telling Patrick’s story.
When I met Linda yesterday, she was glowing. You would never have known that she had been diagnosed in 2007 with Stage IV metastatic breast cancer. Back then, the tumors had been multiplying and the prognosis looked bleak.
Then in 2010, her oncologist put her on a clinical trial that changed her life. After 9 months of rigorous chemo, during which she suffered hair loss and many side effects, she's been cancer free for over a year.
Words she and her husband never thought they'd hear: Cancer free!
Her experience reminds us all how important cancer research is, especially the basic research that is often conceived by young researchers who are most inclined to push the limits of traditional thinking. The Federal Government is the largest funder of cancer research, and the American Cancer Society supports early career researchers whose ideas offer breakthrough promise but who don't yet have the track record to win Federal grants. Today there are so many deserving proposals that only about 10% get funded.
So if you want to make something important happen, get engaged with advocating for cancer research funding. The progress is breathtaking, especially for Linda and patients like her whose lives are saved, but the potential impact for our families, and friends, and generations to come is critically important. We may never discover a single "silver bullet" for all cancers, but every dollar of research support gives me hope that we'll discover a cabinet full of targeted therapies that will save more lives, extend others' lives with a reasonable quality of life, and prevent more suffering.
I spoke with a primary caregiver last night, a young woman we'll call Sally, who is caring for a member of her husband's family. She confirmed that caregiving is lonely, but she added that it's even more lonely when other family members close to the patient are denying that he or she is very sick, or can't / won't eat, or has wounds that won't heal, or is dying.
She described how hard it has been for other family members to pop in from the periphery to keep asking why the patient isn't bouncing back faster. This "seagull" approach to caregiving (dropping in and then flying away, to where it's safe) intensifies the day-to-day caregiver's stress, especially when he or she is experiencing the patient's decline first-hand. Up close and personal caregiving may make it impossible to slip into denial and even more difficult to handle denial from others.
Most patients who are dying want to help their loved ones to cope. They want family members and friends to know when they reach acceptance of the "end game" so they'll support the patient's decision to stop treatment and will be more resilient afterwards. The caregiver's load in caring for a dying patient is physically and emotionally trying enough, without other family members and friends adding to that load by denying reality.
Every caregiver has the right and the obligation to open up channels of communication, to find out where other family members are in their understanding of the patient's medical and psychological situation, and at least to invite them to enter a discussion of the patient's realistic condition. You can't make other family members accept the information, but at least you can offer to have the discussion.
Caregivers' resilience is a gift to the patient and the other family members. Their resilience is strengthened when they and the patient have a broad and realistic support network.
What do you think? Have you experienced family denial? How did you handle it?
Dee experienced a diagnostic challenge similar to several described in the book. She knew something was wrong. She'd started to feel some pain below her rib cage and a little back discomfort. It only hurt when she coughed, sneezed, or breathed hard. At first she thought maybe she'd just lifted something wrong or pulled a muscle.
At about the same time she started to complain of a spot on the top of her head that hurt a lot, especially if she touched it. The spot was so small that she thought maybe she'd been bitten by a tick and that it would go away on its own.
About a week into the side pain, she saw her primary care physician, who scheduled an ultrasound of her abdomen within a few days. The radiologist who read it suggested that she probably had kidney stones. She saw a urologist, who did a cystoscopy and CT scans of the abdomen both with and without contrast. The conclusion was that she did not have kidney stones. There was, however, a small nodule on the bottom of her left lung that hadn't been seen before. The urologist said there was probably nothing to worry about but that they should do a chest scan, just to be sure.
A couple of weeks later, the chest scan showed just the one lung nodule, and it looked a little smaller. Concerned and confused by now, Dee sought out an oncologist, who said it was too early for him to be involved and that the chances of it being cancer were very slim. He suggested waiting two months and doing a comparative scan to track any changes. Meanwhile, almost as an aside, Dee mentioned the painful spot on her scalp. Her oncologist suggested her seeing a dermatologist, who decided to perform a biopsy.
The dermatologist's pathology report called the spot a dermal infiltrate of mucinous carcinoma. Further analysis by more sophisticated pathologists over the next 10 days or so identified it as a metastasis of lung cancer. The cancer was not only in the lung nodule and on her scalp, but had also dispersed in tiny spots around the diaphragm and in the lining of her lung. While the amount of cancer was small, its dispersion was wide-ranging. The result was an alarming diagnosis of stage 4 lung cancer: Not a "come back in two months" message, but a "this could be terminal" message.
After all of this, Dee and her husband were feeling some urgency to get treatment started so no more precious time would be wasted. The easy solution was to go with the original oncologist who already knew the case; he and the thoracic surgery team recommended a surgical procedure to extract cells from the cancerous lung nodule for genetic analysis before beginning chemotherapy. But Dee and her husband decided that the situation was sufficiently threatening to warrant getting a second and even a third opinion.
The second physician, a thoracic specialist, taught them a lot, including that the surgical procedure to sample the lung tissue wasn't required since she had a lesion on her scalp. Yet there was something missing in the chemistry of the potential relationship. Dee suggested cancelling the third visit (scheduled for the next day), but in the end they agreed that they had nothing to lose from the third visit. "When you have three doors in front of you," Dee's husband explained, "you need to open them all to know which one has the prize behind it." In the end, they chose the third thoracic specialist and his team who will use the scalp biopsy tissue to do the genetic tests that will determine the course of chemo treatments.
The additional consults not only led to a change in the hospital and medical team, but have given them peace of mind during a period that was a protracted and stressful barrage of information, doctors' visits, and uncertainty. They're now confident in the course of treatment that will follow, and they're as prepared as they can be for whatever will come. Most importantly, they've found a medical team that is giving them both confidence and comfort as they face the unknown together.
Dee and her husband have drawn several lessons, the most important of which were: