Most of us are used to getting up in the morning and facing the day without health limitations . . . until a serious illness hits us or someone we care about. Many of us haven’t given a moment’s thought to the what-ifs — especially the what-ifs associated with a potentially life-threatening condition.
My 20+ years of volunteering with the American Cancer Society, and my experience interviewing nearly 100 cancer caregivers and writing a book about their learnings, have been a wake-up call for me. I have talked formally or informally with hundreds of people who have faced potentially life-threatening illnesses for themselves or their loved ones. Some of those people are thriving today, and others have died.
Regardless of their personal outcomes, all of them faced the need to think ahead about their health and to talk with loved ones about the most sensitive issues: What if I don’t get better? How can I avoid debilitating pain? How can I make things easier for myself and my loved ones? How can I ensure that my medical team carries out my wishes? Are there circumstances (like letting my children travel to my side) under which I would like them to override my wishes?
In general, these people said they wish they’d had those sensitive conversations earlier, rather than later, and they wished they’d had tools to help make those conversations easier and more complete.
These kinds of conversations are a little like the conversations saying "good-bye" to a loved one who is suffering from advanced cancer. As Deborah O's husband said, "consider saying good-bye before your loved one becomes too ill to do so, even if it turns out to be like the Rolling Stones Farewell Tour which, I think, has been underway since the early 1990s."
When you read about the costs of new cancer chemotherapy drugs, it can truly take your breath (if not your house) away. Recently Reuters and Bloomberg News reported that Amgen's newly approved drug, Blincyto (blinatumomab), for Philadelphia chromosome-negative precursor B-cell acute lymphoblastic leukemia (B-cell ALL) will cost an average of $178,000 for the average patient. Numbers at this level — one of the most costly of cancer treatments — are horrifying to anyone who is facing this form of ALL.
If this is a drug that will make a difference for you or your loved one, don't despair (yet): Check out Amgen's patient assistance website (http://www.amgenassist.com/support_programs/assistance_programs.jsp). This particular drug may not yet be showing as the date of this posting, but you can call their oncology assistance hotline at 1-888-427-7478 from 9 am to 8 pm eastern time. They can put you in touch with foundations that may be able to provide help in funding your treatments.
You may also be able to get help from three other organizations:
Your oncologist or cancer center's patient navigator or social work department may also be able to provide help finding support.
For those of us who work toward a cancer-free world, a world in which cancer is something you live with and not something you die from, "precision medicine" offers long-term hope. My Huffington Post article ("4 Rays of Hope for 'Precision' Cancer Therapies"), posted on December 16, provides an overview of emerging directions in cancer research.
Very simply, research is seeking treatments that target only the cancer cells and don't damage healthy ones. Such treatments, known as "precision medicine," offer hope to improve both survival and quality of life for cancer patients. The combination of developments in genomics (study of how each person's genetic make-up creates predilections toward or resistance to certain diseases), proteomics (study of the proteins and enzymes that our genes excrete), immunomics (study of ways that the immune system might be stimulated to fight certain cancers), and big data ("informatics") are potential game changers.
This article tries to present a layman's overview of some highly sophisticated scientific work that generates longer term hope for all of us. It will take lots of time, sustained cancer research funding, and extensive investment in data collection, storage, and analysis systems to realize the promise. That won't be quick or easy, but it's exciting to know that there's significant hope on the distant horizon.
Thanks to Dr. William Phelps, Ph.D. and Director of the American Cancer Society's Preclinical and Translational Cancer Research Program, for his contributions to the article, for making truly complex concepts accessible to all of us, and for investing his personal energies in a cause that will benefit us all.
I've been engaged in cancer advocacy for years. Advocacy is the process of trying to educate and influence legislators to shape public policy in a direction that can help a particular cause. (Legislators weren't born "smart" about every topic they encounter—they often need educating to understand why something we want them to do is so important)
For me, the cause is help to cancer patients, particularly the help that could come from increasing Federal cancer research funding. Yet our Congress is being penny-wise and pound foolish:
The American Cancer Socierty's Cancer Action Network (www.ACSCAN.org) and advocates from major cancer organizations and cancer centers are all pressing for increasing research funding. Other health organizations are pressing for increases in funding for their disease areas.
Sustaining and increasing research budgets for major life-threatening diseases just makes good sense. To some of us, it's as natural as motherhood and apple pie to put money where it can save lives in the long term.
Yet recently I had a wake-up call on this topic. I was volunteering at the Making Strides Against Breast Cancer event in Boston where we were circulating petitions to Congress to increase Federal cancer research funding. You can identify most breast cancer survivors who are in attendance because they register and wear a banner that says "Survivor." Curiously, several of those survivors refused to sign the petition. Each has experienced the terror and challenges of breast cancer on herself and her family. (On that day, all were women.) Many have lost other relatives and friends to the disease. All who were there were raising money for the American Cancer Society, some of which goes to research. And yet some survivors wouldn't add their voices to the chorus by simply adding their name and zip code to a petition to ask Congress for appropriate action.
Have we gotten to the point in our country where rampant politics or obsession with confidentiality are stopping us from speaking out for what's right? Or are we just not willing to speak out, lest it sound politicly incorrect or require us to go out of our way and do something out of the ordinary?
It's a certainty that we won't finish the fight against cancer in our lifetimes if we don't start funding research on a predictable enough basis to inspire young researchers to go into and stay in the field and to sustain the long-term projects needed to discover breakthroughs. It's also a certainty that there's power in numbers.
Those of us who have had cancer must speak up and tell our legislators that we expect them to sustain this important priority. That's not hard work. It's just good common sense.
Sammy is a professional advocate. She is a professional in the field of helping prevent and deal with the consequences of sexual assault. She works with people who have faced significant threats to their psychological and physical welfare, and she helps them to overcome both traumas. So it's no surprise that when her 45-year-old husband was diagnosed with bladder cancer, Sammy sprung into full action mode.
Initially he was treated at a community hospital where things just didn't seem to be going well. After his initial surgery, he not only didn't get the kind of patient focus that every cancer patient needs psychologically, but they left after his initial recovery without any information about what to expect or do moving forward. Convinced that he wasn't getting the best treatment, Sammy moved into the void.
She used what little information they had been given to seek out, on line, hospitals offering state-of-the-art treatment, and she found a cancer center in one of Boston's best hospitals only two hours from home that specialized in bladder-saving surgery. From the moment they consulted with the multi-disciplinary team that offered this specialized treatment, Sammy and her husband felt a sense of relief. The four physicians with whom they met, each representing a different specialty, were working together to plan her husband's course of treatment, a series of steps that would attend not only to his long-term survival but would also preserve his quality of life in the interim. The staff have been attentive; each doctor and nurse has followed up with him after every visit to ensure that each of them has done everything possible to answer their questions and to advance his well-being.
Now, three months after their first Boston consult, as I talked with them at Boston's Astra-Zeneca Hope Lodge Center, both are beaming. They've learned that he is already cancer-free, as a result of both surgery and initial rounds of radiation and chemotherapy. Even though the most aggressive chemo lies ahead, chemo that should sustain his cancer-free state, they are both wearing non-stop and contagious smiles. Not only has his life been saved, but his quality of life has been preserved so he can enjoy raising their young son.
There's a moral to this story: Sammy took charge. She did her research. She questioned what was being offered locally. She applied her professional skills to the problem her husband needed her to solve, and they both already see the benefits of having done so. Cancer caregiving isn't easy. In fact, as Sammy says, the stresses for the caregiver are sometimes challenging and unexpected. But for Sammy, her strong coping skills have generated early positive outcomes that will sustain them through his remaining treatment and beyond.
Take a lesson from Sammy. You have nothing to lose in taking charge of your loved one's care.
It would be easy to feel overwhelmed by negative news from all over the world, whether the issue is gun violence in this country, the border crisis and immigration issues, the tragedy unfolding in Ukraine, or the violence persisting in Israel / Gaza and other hot spots in the middle east. . . . So every once in a while, when people show their finest instincts, it's worth sharing the good news.
That's what happened at my golf club this past weekend. Golf tournaments are notoriously weak fund-raisers because the courses where they are held often charge so much for use of the course and the meal that inevitably accompanies the golfing event.
Back in March, I raised with the club's ladies' golf board the idea of a charity golf tournament to benefit The Cancer Support Community—Massachusetts South Shore (CSS-MSS), which provides free psychological and social support for adults at any stage of the cancer experience, whether they are the patients or the caregivers.
The idea had to move through various channels before being blessed in mid-June as a club-wide event scheduled for July 27. We had exactly five and a half weeks to get a committee organized and to mobilize both members and staff. It felt like we had Mount Everest in front of us, but a strong and motivated event chair and a carefully selected team of people got on the case with a vengeance.
The net result: Don't ever let anyone tell you that something amazing and important is impossible.
Once we knew the event would come off without a hitch, we started to worry about troublesome weather. It rained off and on all day during the event, but there was no thunder or lightening, so no one cared. Everyone had an amazingly fun time. The auctioneer was sensational. Spirits were high. In fact, several people came to check out after the event and wrote additional checks to the charity because they were so invested in the cause and the event's success.
An amazing amount of money was raised--$33,000 net, more than 10 times my original estimate, but more importantly, this group of people forged a sense of community and shared compassion for a cause that's bigger than any one of us. The cause mattered to all of us, and the results were memorable. The funds raised will all go directly to program support for those who are dealing with the life-changing impact of cancer and who are feeling truly alone.
Maybe sometimes we just need to be reminded what it really means to have a bad day, how lonely a cancer diagnosis may make you feel, and what positive impact each of us might be able to have if we reach out, beyond ourselves, and help even one person who is having a hard time dealing with cancer and its implications.
In the face of a disease that's cruel and defies a silver-bullet cure, we're making progress day by day, person by person, gene by gene, and support group by support group. That's worth remembering and smiling about.
I hear cancer stories every day, but this morning's was a dilly.
Sharon was diagnosed two years ago with ovarian cancer, at age 36. It was pretty serious then, as is any cancer at that age. She was treated at an affiliate of one of the world's best cancer hospitals, in the Boston area. Her treatment was so severe that she was close to death before the cancer was finally brought under control. Except for almost dying from cancer, she was strong as an ox, and that's fortunate since extensive surgery was needed to remove her ovaries, uterus, and some other organs and tissues that might have been reached by an errant cancer cell. After all, she was young, with a husband and two children. She had lots to live for. And she trusted her medical team.
Six months ago, 18 months after her treatment ended, a scan revealed a spot on her liver. Just a spot. Her physician, supposed to be one of the best, said "We can't do a biopsy, so let's just watch it. There's a chance it was just scar tissue from the earlier surgery." That was six months ago. She didn't ask for the next scan to be sooner. She knew she couldn't yet be declared "cancer-free" after only 18 months, but she trusted what she was told.
Last week (after six months of waiting), Sharon went in for another scan, and the spot that was "noticed" six months ago was in fact a sign of metastatic cancer. It's back with a vengeance. She now has a golf-ball-sized tumor in her abdomen, spots on her liver and lungs, and more. She's back in heavy chemo and doesn't yet know the prognosis. She trusted the doctor who said, "Let's just watch it." She didn't press or push back or say, "What else can we do to make sure? Why not do more frequent scans? Is there anything we could be doing now to prevent trouble down the line?" Now Sharon's fighting for her life again, and the odds aren't getting any better for her.
The moral of Sharon's story, at least for me, is that you must must must push back when something looks suspicious on a test or a scan. You must take charge of your own care and not trust everything that even the best doctor says about watching and waiting and "let's see what happens." That's because it's your body. Waiting too long in a questionable situation, with a potentially lethal cancer, may just give you a little trip to Hell, and only if you're lucky will it be a round trip ticket.
So . . . You must be your own advocate. You must ask every possible question. You must ensure that the watching of something questionable or suspicious or just not right is frequent enough that it won't lead you down an irretrievable bad road.
Sure, you need to trust your physicians, but you also need to remember that no one values your life as much as you do, and you've just gotta push back.
The New York Times, on May 9, carried an article entitled "Patient's Cells Deployed to Attack Aggressive Cancer." The title alone caught my attention and offered breathtaking hope for patients with advanced cancer.
The story summarizes a research experiment conducted at the National Cancer Institute (NCI). Researchers sequenced the genome of the potentially fatal cancer that whose cholangiocarcinoma (cancer of the bile-duct) had metastasized to her liver and lungs. Standard-of-care chemotherapy wasn't working, so she had nothing to lose in trying an experimental treatment.
Researchers at the NCI studied the genetic pattern of her cancer and discovered a particular mutation. Then they identified cells in her own immune system that could attack the cells that had the mutation. They cultivated those cells and injected billions of them back into her body. She's not cancer-free, but her cancer has receded enormously, and she has survived a nearly fatal prognosis almost one year later.
This kind of treatment is called "adoptive cell therapy" and has potential to treat several more common cancers. Such a treatment has, so far, only helped one patient, although a similar approach has been used with a couple of melanoma patients. It is now being studied at NCI and a small number of other labs for its potential to attack other types of cancer.
While this development isn't yet available in a nationwide clinical study, it offers more than a glimmer of hope on the horizon and illustrates the dramatic progress that could be made if:
Today I posted an article on Huffington Post on the urgency of advancing clinical trials for invisible cancers (http://www.huffingtonpost.com/deborah-j-cornwall/clinical-trials_b_5266765.html?utm_hp_ref=healthy-living). Many of these cancers — like mesothelioma, pancreatic, ovarian, and many types of mucinous (non-tumor) cancers — aren't discovered until they're too far advanced to cure.
After posting the article, I learned about another important place to find clinical trials for mesothelioma (http://www.mesotheliomaguide.com/treatment/clinical-trials/). Apparently there is also a recent development from a Stage 3 clinical trial that warrants the attention of current patients facing advanced mesothelioma diagnoses. An article describing it can be found at http://meso.gd/1fZmvk0. The treatment being developed is specifically for people with Stage III and IV diagnoses who are experiencing relapses and is based on the principle of angiogenesis (constraining the development of blood vessels within tumors) that has proven powerful in treating other cancers. It is still not a cure, but it prolongs life, which may be the first step toward a cure.
The statistics show that many patients diagnosed with these kinds of cancers at an advanced stage would be willing to consider participating in a clinical trial if they knew they existed and what impact the trial would have on the quality of the time they had left. I hope you'll take a look at the article and let me know what you think. The urgency of this issue can't be overstated, so if you or a loved one or friend is in this situation, ask your oncologist what kinds of trials might make your remaining days more comfortable while contributing to medical science so other lives might be saved in the future. That's a way to make sure that cancer won't win in the future.
Anyone who has been through the cancer space knows about support groups that involve meeting, chatting online, or engaging in telephone conference calls. Some people living with cancer reach out readily to embrace such resources. Many discover that dialogue with a social worker or a group of people facing similar concerns helps them overcome the isolation that accompanies a serious cancer diagnosis and may even offer some useful strategies for daily living. Others say they're uncomfortable sharing their deepest hopes and fears with folks they don't know, or they may say they're fine and don't need that kind of "warm, fuzzy stuff." Still others are in denial.
What many patients may not realize is that seeking emotional and psycho-social support for themselves can actually be a true gift to their caregivers, both during and after treatment. It's a powerful message, but it may be unspeakably hard to carry out when you're still in shock from the facts of a nasty diagnosis.
Take Paul. He's in his mid-40s and is dying of a particularly virulent esophogeal cancer that was diagnosed less than six months ago. His surgery and recovery were difficult, and he's miserable all the time. He had just changed jobs a couple of months before, and his new employer has just terminated him because Paul is too sick to go to work. His oncologist has told him that no further curative treatment is possible, and Paul now has nothing meaningful to do all day except feel miserable and worry about what's to come.
His wife had only been working part time and from the house, spending much of her time raising their pre-adolescent children. Now she's faced with having to find a full-time job fast that offers both a reliable income stream and full medical coverage so they can avoid paying huge amounts for his COBRA coverage.
Their children know that Dad's sick, but they don't know that he's dying. What they do know is that Dad's not himself—he's cranky, complaining, morose, and unable to spend any quality time with them. He's not good company for anyone. He won't even talk to them. He's feeling sorry for himself and feeling hopeless. In short, he's become so introspective and emotionally consumed by his cancer 24/7 that the Paul everyone knew and loved is gone, even though Paul himself is still alive.
If you raise the issue of support to either Paul or his wife, you get a quick brush-off. Paul won't think of it, saying it's his life and not anyone else's to share, and rejecting any efforts to convince him otherwise. His wife simply doesn't have time to seek support because she has to find a job fast, so they don't deplete all of their financial resources in his care. They're both feeling trapped, and both desperately need help they're not willing to seek out.
What no one is considering yet is the impact that Paul's current state of mind is having on the entire family unit and the way it will affect their ability to heal after he's gone. If he were in his right mind—if this were life as it used to be—he would never think of neglecting his wife and children. But Paull is not in his right mind. He's overwhelmed with his cancer experience. That's understandable, but it's hurting everyone in ways he would never have intended.
The best thing that Paul's oncologist, or his wife, or his minister, or his best friend could do for him is to wake him up to life beyond himself, that his family is facing the prospect of losing him and that the more positive and loving memories he can create today and tomorrow and next week, the easier it will be for them to heal. Whether help comes through a support group at his cancer center or through one-on-one counseling, or through hospice care, the most valuable gift he can give to his family and to himself is the choice to savor every day as it comes and to create new, positive memories for his wife and children to cherish after he's gone.
That won't be easy, but it may help him remember the joys of his earlier life and to feel that he's creating a comforting safety net for those he loves the most.
My latest Huffington Post article, http://www.huffingtonpost.com/deborah-j-cornwall/symptoms_b_4804631.html, deals not with cancer, but with what are called invisible diseases. These are diseases that present a bundle of symptoms that could be mistaken for other conditions and that are unrecognized by many traditional physicians. Often these are diseases of total-body systems (adrenal, autonomic nervous system, and so on) that may be recognized only recently by medical school programs. In that regard, they may share some things with rare cancers, in that it takes time, effort, and persistence to identify them. The major difference is that unlike cancer, some of these are debilitating but not life-threatening. I hadn't known about these until a relative, Val, shared her story. It's moving and provocative.
Any one who tracks news reports on a regular basis sees every day stories that are attention-grabbing, which can often mean horrifying, deviant, shocking, or tear-inducing. This week I had a tear-inducing experience on the good side--the side that shed light on those among us who represent all of our better instincts. I attended a "Gala" fund-raising event in Boston's TD Garden (down on the floor of the sports venue) to benefit the AstraZeneca American Cancer Society Hope Lodge in Boston.
Thanks to hundreds of attendees and sponsors, this event raised a net $1,000,000 to support the Lodge.
The generosity of donors, both before the event and on site, and the generosity of survivors and current patients in sharing their stories and their impressions of the hospitality and support they found at Hope Lodge, were almost overwhelming. The event honoree, Jim Foster (CEO of Charles River Laboratories), was masterful in the support he mobilized from his organization, the business community, and his family. Charles River's generosity in providing packages that enriched the live auction and generated a literal "feeding frenzy" among bidders helped bring the event over the top.
An event like this one and the widespread involvement and support that makes it work really reminds us about what really matters--what it really means to have a bad day and how our shared better instincts to support each other can spread powerful feelings of goodwill, mutual appreciation, and the fulfillment of giving back. In this season when we remember the Boston Marathon tragedies, and when every one of us knows someone who is touched by one health and survival challenge or another, let's give thanks for people who put their money where their mouths are and make the world a truly better place for the rest of us.
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.