|
|
              
 |
A Caregiver's Notes
Guiding the River: A Caregiver’s Guide to Beginning Treatment by Hana Pester
“So your partner has cancer?” “Yes, he has a sarcoma in his hip bone.” “Is that malignant, like lung cancer?” “Yes and no. All cancers are malignant, but lung cancer and Ewing’s sarcoma, the kind of bone cancer Ariel has – they’re really different.” “I thought some cancers were benign.” “No, some tumors are benign. If it’s malignant, which literally means ‘harmful,’ it’s a cancer. All malignant tumors are cancers—those terms are synonyms. All sarcomas are cancers, meaning they’re malignant. But just like not all tumors are cancers, not all cancers are sarcomas. They’re really three increasingly specific categories of cellular mutation.” “What?” “A tumor is any group of cells that sort of changes strangely—grows in places or in ways it shouldn’t. If it doesn’t interfere with your body’s functions and if it isn’t capable of spreading into vital systems where it could kill you just by getting in the way of, say, lungs trying to breathe or synapses trying to fire to tell lungs to breathe, a tumor can be benign. But a sarcoma, in particular, is any kind of cancerous tumor that develops in a connective tissue like a joint or a nerve. If it’s a malignant tumor, a cancer, and it started off in connective tissue then it’s a sarcoma, period. That’s really all they have in common.” “Oh! So if it’s malignant, it’s a sarcoma?”
Water Cooler Oncology Welcome to the world of “water cooler oncology” in all its mind-numbing glory. While my lifemate Ariel was busy saying goodbye to his hair and starting physical therapy, I was standing in for Bud Abbott and the rest of civilization played Lou Costello and tried in vain to answer the question, “Who’s on First?” The rest of civilization felt no real need to frantically immerse themselves in this strange new mythos of black-hat and white-hat cellular mutations.
On a regular basis I wanted to tell these folks, “It’s really not your business anyway. I know you just want to hear that everything’s okay but it isn’t. I am not going to lie but I’m also not going to walk you through all of this painful, personal stuff.” But these were coworkers and friends, neighbors and extended family. And to be fair, they probably felt like they were in a tough position too.
When I first returned to work after several days spent helping Ariel through the diagnostic process I described here last month, I did my best to appear calm, focused and well rested. But I think I looked more like a weary woman who’d spent a week on her feet, watching frightening problems get worse and never sleeping more than an hour at a time, which in fact that was accurate. So I quickly figured out, and the rest of my acquaintances noticed eventually, that I wouldn’t be too good at small talk for a while. Inquiring after Ariel’s health became, to their minds, a polite alternative to an extremely awkward silence.
Getting Your Bearings If someone you love is beginning treatment for a sarcoma, I have two pieces of good news for you. First, you can allow yourself to feel relief at finally having some answers. Many sarcoma patients experience distressing pain or other life-disrupting symptoms for weeks, months or even years before identifying the problem. Since these cancers often affect young, otherwise healthy people this situation can be especially frightening and infuriating. Knowing what is wrong can empower everyone involved to start seeking solutions.
You also now have a productive direction in which to aim all that fear and fury; be angry at the cancer. Learn everything you can about it and help your loved one make informed, thoughtful decisions that will ease and facilitate the treatment process. This will help you to feel connected and it will also allow you to act as a liaison whenever that need arises, which it will in many different situations.
You may find yourself cornered into conversations like the one I recalled above. I endured several variations on that exchange throughout the 10 months of Ariel’s treatment. Whether you’re interested in educating the well-intentioned people who will ask all sorts of questions, or you would just like to understand the disease that is currently transforming your life and the life of someone you know, it’s a good idea to start by considering sarcomas and the treatments that can affect them.
Partly because sarcomas are rare, and partly because the cells that mutate to form them are primitive and variable, this category of cancers contains many very different kinds of malignant neoplasms—new cells that tend to spread fatally into the lungs. The majority of connective tissue tumors, according to Dr. David Harmon of Massachusetts General Hospital’s sarcoma team, are in fact small and benign. But larger connective tissue tumors—those averaging over five centimeters in diameter—tend to be malignant.
Dr. Harmon further explains that each subtype of sarcoma behaves differently. Certain classes are highly responsive to treatments such as chemotherapy and radiation while a few are largely unresponsive, and some respond within very average parameters. He notes that the rarity of sarcomas presents one of the major challenges of treatment. “Many of the most important sarcoma questions haven’t even really been asked (in a scientific setting), let alone answered.”
A Hopeful, Active Approach Dr. Harmon agrees that many people who lack intimate exposure to cancer view it as a death sentence. “Far too high a percentage (of patients) die, but if you take a hopeful and active approach, you can determine if the fight has potential.” Because sarcoma treatment outcomes vary widely and can be difficult to estimate, he urges all newly diagnosed sarcoma patients to pursue reliable answers to these questions before beginning treatment.
1. How certain is the diagnosis? What kind of tests did attending physicians order, and were the results truly conclusive? Note: See my last article in this series for a guide to the tests that comprise the diagnostic process for sarcomas.
2. What is the prognosis and what can be done to change it? How long can someone expect to live with this cancer? What is the likelihood of a cure, bearing the current state of the cancer and of the patient in mind?
3. What are the treatment options? What will they require of the patient physically, logistically and financially?
Sarcoma treatment almost always involves systemic chemotherapy—the infusion of very strong medicine into the circulatory system through a central line. The central line (usually either a Hickman port in the chest or a PICC in the arm allows the medicine direct access to the circulatory system without damaging veins the way that a repeated intravenous infusion of such harsh chemicals would.
Many sarcoma treatment protocols begin with several cycles of systemic chemotherapy, followed by tests such as CT or PET scans, blood tests and scintigraphs to assess the chemotherapy’s initial effects on the cancer. A team of doctors, usually including a physical oncologist, radiation oncologist and surgical oncologist, will review the results and work with your loved one to select a local treatment - surgery, radiation or some combination of the two – that they hope will destroy or remove any remaining detectable cancer cells that have survived preliminary chemotherapy.
Choosing Wisely, Treating Thoughtfully Local options are very important elements of the sarcoma treatment process. Surgery and radiation are broad categories; each encompasses several different options. Because local treatment is extremely complex and patient-specific, we will address them further in future articles. But when it comes time to consider local treatment options, ask each attending specialist the same kinds of questions that Dr. Harmon suggested for your physical oncologist at the start of protocol.
Usually chemotherapy cycles will follow local treatment or continue concurrently. Ariel, for example, started chemotherapy in November of 2002. Every three weeks he underwent an alternating cycle, one 2-day sequence of vincristine, doxorubicin and cyclophosphamide followed by two weeks and five days of rest and then one 5-day sequence of ifosfamide and etoposide, followed by two weeks and two days of rest. In February of 2003 he began daily radiation treatments, which he attended five days a week for 10 weeks. Throughout his radiation treatments he continued his regular cycles of chemotherapy but skipped the doxorubicin, because this particular drug reacts poorly with radiation.
After 6 months of chemotherapy and 10 weeks of radiation Ariel’s oncologists still recommended that he complete the remainder of the standard chemotherapy protocol for his type of sarcoma - an additional four months’ worth of cycles. Although Ariel was extremely tired of life as a cancer patient, he agreed to follow his doctors’ advice. It is important to remember that sarcoma treatment ends not when the patient appears to be cancer-free but when all the phases of the preferred, trial-tested protocol are complete. These protocols are designed to eradicate any cancer cells remaining in the body but not yet detectable or treatable locally. No treatment existing today can prevent additional cancer cells from forming later, but allowing the body to heal with a clean slate vastly increases the likelihood of any patient remaining cancer-free.
Despite this great news, Ariel’s oncologists still recommended an additional two weeks of radiation followed by the remainder of the standard chemotherapy protocol for his type of sarcoma—an additional four months’ worth of cycles. Although Ariel was extremely tired of life as a cancer patient, he agreed to follow his doctors’ advice. It is important to remember that sarcoma treatment ends not when the patient appears to be cancer-free but when all the phases of the preferred, trial-tested protocol are complete. These protocols are designed to eradicate any cancer cells remaining in the body but not yet detectable or treatable locally. No treatment existing today can prevent additional cancer cells from forming later, but allowing the body to heal with a clean slate vastly increases the likelihood of any patient remaining cancer-free.
Understanding Chemotherapy All chemotherapy drugs act on the same basic principles—they somehow prevent the body’s fast-growing cells from carrying out a particular stage of growth (cell division) so that they will die rather than reproducing. These medications fall primarily into the following classes. To learn more about specific chemotherapeutic agents and their mechanisms, visit our Drug Information links page.
Many chemotherapy protocols employ several different cellular toxins that each target a discrete phase of cell growth or block a particular chemical component of the process, so that one drug may still be able to inhibit cancer cells that are more resistant at other phases of reproduction.
The body’s healthy cells typically stop dividing when conditions become toxic. But cancer cells often lack these inhibiting impulses, keep dividing in the presence of the cellular poison, and so are more susceptible to chemotherapy agents than normal cells are. However, while healthy cells do have survival mechanisms that cancer cells do not, chemotherapy is often very traumatic to all fast-growing cells. This is why patients lose absolutely all of their hair - hair follicles are fast-growing and vulnerable to chemotherapy. This is also the cause of treatment-related nausea; the epithelial cells that line our digestive systems are fast-growing and without them, stomach acid can easily reach uncomfortable levels.
Your loved one may also feel tired as a result of chemotherapy; red blood cells are vulnerable to cellular toxins and loss of them does result in anemia and fatigue. Chemotherapy will also affect the immune system, and it is very important to be sensitive to the repercussions. Because chemotherapy destroys white blood cells, the foundations of the body’s immune system, patients become especially vulnerable to all kinds of infections.
Chemotherapy will also affect fast-growing cells in the mouth and rectum so that these areas can more easily let infection into the body. Help prevent this by proposing that your loved one use a non-alcoholic mouthwash in the morning and after meals, and also by suggesting that he or she use a stool softener unless diarrhea has been an issue. When stool is too hard and epithelial cells are depleted, rectal tearing can lead to very uncomfortable and dangerous infections.
Although the two of you may feel shy about discussing such personal issues, it’s important to be sure you do everything you can to help the person you care about stay strong and relaxed throughout this challenging process. If you do not feel comfortable asking whether this is a concern for your loved one, find someone you think that he or she would talk with—a trusted nurse, another family member or a close friend - and ask that this person bring up the topic.
After a chemotherapy infusion circulates through the body, killing cells at its targeted stage of division, a patient will take time off from the medication to heal and to replace the dead fast-growing cells, including the dead cancer cells, with healthy cells. This is why oncologists administer chemotherapy in cycles—multiple hours or days of infusions followed by a recovery period. Your loved one may receive chemotherapy as an inpatient or as an outpatient, depending on the severity of the treatment’s effects and on the resources your hospital has available. Various chemotherapy drugs have a wide range of side effects, and every patient reacts in a unique way.
Preparing for Side Effects Although this process does affect each patient differently, there are a few significant effects of sarcoma chemotherapy that near-universally make normal life functions harder for patients undergoing treatment. We list them here in order of usual presentation, starting during infusion and moving later into the cycle.
These effects can start as chemotherapeutic agents hit the bloodstream and begin their work. They may persist for several days after infusion.
Nausea/Olfactory Sensitivity Your loved one may vomit repeatedly or simply lose his or her appetite. He or she may want food but react differently than usual to old favorites like citrus or seafood—chemotherapy can make strong smells even more pronounced.
How You Can Help: Offer some fairly bland, familiar foods before the infusion begins. ‘Nilla wafers, banana bread, pretzels, or crackers that are salty but not greasy can help absorb stomach acid, preventing additional nausea, without aggravating a hypersensitive nose. Encourage your loved one to drink cool water and clear juices to stay hydrated during and after infusions. This will decrease nausea and lessen the likelihood of longer-term side effects including kidney damage.
Temperature Sensitivity, Aches and Pains Chemotherapy patients may perspire during and after infusions and this sweat, as well as other bodily fluids, might have an unusual or strong odor. Some chemotherapy can cause muscle soreness and some can cause neuropathy – numbness, tingling or stabbing sensations.
How You Can Help: Again, drinking lots of fluids will prevent dehydration and keep your loved one more comfortable. Observe his or her body language and ask how he or she is feeling. Gentle massage or simple physical contact like hand-holding might help relieve soreness and stress, and will also remind him or her that you appreciate spending time together, regardless of the circumstances.
Fatigue and Depleted Immune System Disorientation, light-headedness and downright physical exhaustion are all frequent companions to patients receiving chemotherapy. You may notice your loved one getting pale, moving slowly or sleeping much more than usual. This is a result of chemotherapy depleting the body’s red blood cells.
Chemotherapy will also damage white blood cells, which contribute heavily to the body’s immune system. Your loved one will become increasingly vulnerable to infection throughout the treatment process and these infections will represent greater than usual risks because of decreased healing ability.
How You Can Help: Make room in your routine to pick up whatever slack you can, and ask for help from other people when possible. Many chemotherapy patients take time off of work, and most need relief from typical chores or projects around the home. Tell your loved one that fighting cancer is now his or her full time job and that you are available to support that function however you can. Be sensitive to his or her changing limits—let friends, family members and employers know that he or she may need to stay home a great deal, to rest and recover. We will talk more about communicating with employers in our next article; contact us if you have specific questions about this issue now.
Help protect your loved one from infection by keeping the home and car clean, by thoroughly cooking any meats you prepare and by carefully washing all produce. Suggest that he or she avoid indulging in much alcohol – in more than small amounts it does further decrease the immune system’s ability to fight infection.
Let friends and family know that you are being very careful to avoid getting sick, so they should let you know if they are fighting colds or other contagious illnesses before making plans to visit. Schedule routine blood tests, or other appointments in crowded public places, at the slowest times of day. Most importantly, know when to call the oncologist—if your loved one is running a temperature of 101 degrees or above, contact the doctor right away.
Do not underestimate the immune system’s role in this process. All cancer treatments—chemotherapy, radiation and surgery—work by destroying existing cancer cells. The only thing that can replace those cancer cells with healthy cells is your loved one’s own body. Give it what it needs to do its job.
This effect will likely begin about 2 weeks after the first infusion and will last, with some possible intermittent regrowth, until a month or two after chemotherapy ends.
Hair Loss Hair follicles are fast growing cells and chemotherapy will affect them all. Hairstyle, eyebrows, eyelashes, nose hair, leg hair, and pubic hair will fall out within one or two cycles of most sarcoma chemotherapy protocols. Affected areas might feel itchy or sore during this time and may remain sensitive throughout chemotherapy.
How You Can Help: Recognize that sudden, complete hair loss can be very traumatic for a person of any age or gender. This can feel like a big, embarrassing change. A lot of men feel emasculated by the sudden lack of beard or chest hair while many women feel extremely self-conscious about losing the hair on their scalps. Frequently mention that he or she is still beautiful to you.
Help pick out soft scarves and hats to keep a vulnerable head warm and protected. Also help choose comfortable cotton undershirts and underpants; body hair helps diffuse friction and moisture, and your loved one will notice its absence. Cornstarch-based body powders can also help make this change easier to handle. Finally, make sure he or she has a ready supply of tissues at all times—runny noses are status quo throughout this process.
After speaking with the physical oncologist about the start of treatment, visit NIH’s Drug Information page to learn more about the specific drugs that your loved one will receive. This will help you understand the process and prepare for possible side effects. Remember, however, that every patient does have a singular experience. The information you read about chemotherapy and about other cancer treatments may seem frightening. It’s extremely counter-intuitive to make a person sicker in order to heal him or her, and chemotherapy can appear to do exactly that. Dr. Harmon offers this reminder, “In choosing a course of treatment we often push to the limits of tolerability, usually aggressive treatment increases the chance for a cure.”
Plotting a New Course There are a few actions you can take to keep treatment from pushing you and your loved one to the limits of tolerability in other areas. First and foremost, give yourselves permission to make this process your first priority emotionally. Admit that you cannot stretch yourselves infinitely thin, and think about the goals and relationships away from the oncology floor that will remain important to you during treatment.
Communicating with your closest friends and family members, keeping up your professional relationships and setting aside time for your spiritual life are good examples of commitments you may want to carefully maintain throughout treatment. But it can also help to take a mental inventory of tasks and goals that can wait for later. You may struggle to make yourself available for simple appointments like haircuts and dentist visits between hospital stays, so consider admitting that this will not be the year that you paint the house or adopt a new puppy.
As you adjust your routine, bear in mind which people you will need to occasionally update, along with the kind of information they will want. This list will likely include family and friends, but also healthcare contacts who may not be directly involved in treatment.
Healthcare ContactsThis group will consist mainly of your health insurance provider and your loved one’s primary healthcare provider (PCP). Most insurance policies will require that the PCP refer all specialized care, like cancer diagnosis and treatment.
How You Can Help: Assuring Coverage – Many policies also make a distinction between in network and out of network care, covering in network services more thoroughly. If you live outside of a city it is likely that you will seek sarcoma treatment out of network, because sarcoma centers are typically parts of large regional hospitals. In order to get as much insurance coverage as possible (and pay as little out of pocket as possible), it is important that you keep the PCP in the loop.
Contact him or her right away, as soon as your loved one receives a diagnosis, if not during the evaluation process that leads up to that point. Explain the situation and say, “I need you to refer and pre-certify treatment, please. This cancer is rare and so we’ll need to go through a sarcoma center to have the best chances… can you help me find out what my insurance company needs from you so that we can get all the coverage our policy really provides?”
Cross Every t and Dot Every i: Call your insurance company and get a representative up to speed. Ask what distinctions your policy makes between in network and out of network care, and how that changes when a PCP refers and pre-certifies that out of network care is medically necessary. Say the words “rare cancer” a lot; be patient and polite.
Build Your Team: The trick to managing this extremely tedious and involved aspect of the process (where the money will come from) is to transform the PCP and insurance company into advocates, instead of allowing them to retain a sense of routine. Sarcoma care is the kind of highly involved life-and-death medicine that will elicit sympathy if you open up a bit.
Thank them for their help and tell them you want them to feel like part of your loved one’s team. Don’t be afraid to share a few details of his or her condition or admit that you are feeling overwhelmed. Tell them you want to be sure to get the best coverage your policy provides, and you will need their help to make that happen.
If you do not have a copy of your health insurance policy, ask for one. Read it thoroughly, noting the coverage rates and requirements for these components of care.
Family and Friends Relatives and social circles may feel particularly removed and helpless, as though they should somehow be doing more, no matter what. Your loved one’s treatment decisions, spiritual choices and level of sociability may be quite different from what they have in mind, and you may easily find yourself in the middle of surprisingly heated conflicts.
How You Can Help: Boundaries – Don’t be afraid to decline visits or telephone calls when you would prefer some private time. Explain that you are both simply feeling overwhelmed and that it helps just to know they are thinking of you. Remember that first and foremost you must sometimes act as a line between your loved one and the rest of the world during this process, so that he or she can focus on getting well. Say no thank you when the need arises or, if that doesn’t work, simply say no.
Technology – If family and friends have Internet access, start an email list or a website (see, e.g., CaringBridge). This will allow you to write one update that all concerned parties can read and respond to, without overwhelming you.
Usefulness – Everyone will ask you, “How can I help?” Although it may often feel like the honest answer is “you can’t,” many family members are really just requesting some chance to feel involved. Suggest any of the following.
Confronting Misconceptions In communicating with family and friends, healthcare contacts, and the rest of the people who will take an interest, you may notice a surprising degree of misconception about cancer. Many people who intersect with your loved one’s usual daily routine will be curious about the process that has co-opted his or her attention. They will turn to you for answers and reassurance.
They may mention anecdotes that seem wildly unrelated. The aunt with breast cancer, the brother with skin cancer, and even the receptionist with ovarian cysts can all become suddenly-predominant conversation topics as people search for ways to connect with a troubling (or just fascinating) situation. You may choose to educate them on the particulars or sarcoma care, or you may opt to just nod sympathetically and thank them for their concern. Often people do not really want much information; they want to feel included without coming too close to a serious condition that worries them. Changing people’s minds about sarcoma can feel very empowering, but it is not your responsibility. So connect or keep your distance – whatever feels appropriate and doesn’t tax your already-overstretched emotional resources too much.
If you do decide to offer some perspective, start by reminding people that cancer care and prognosis are extremely individual. Encourage them to remember this, rather than comparing one patient’s experience to another’s. Many people will ask about quality of life—I’ve often heard questions like “is he in pain,” and “does he get around alright?” You can, if you like, explain that cancer can cause some discomfort and difficulties and that the treatments can as well, but that you are committed to seeing this as a process and that you work with the medical team to make sure your loved one is comfortable at all times.
Sometimes people will stop their descriptions of a cousin’s colonoscopy or other suddenly relevant experience with hospital care to look deeply into your eyes and say, “this is certainly big stuff… how are you?” This can be the hardest question to answer. You may be so focused on balancing your new caregiving role with the rest of your life that you do not think much about your own feelings. Or if you do, you may not want to discuss them with this person or at this time. My response in these situations has usually been, “thanks so much for asking. I’m feeling tired but very hopeful, and it helps to know so many people are thinking of us both.”
Collaborating with Love These elements of caregiving—the sort of “public relations” side of things—can require a lot of your time. They are important parts of the process that your loved one may not be able to handle easily, and he or she will likely appreciate your willingness to ease the burdens of communication as long as you are very careful to avoid putting words into his or her mouth.
It’s very easy to get so wrapped up in the vast logistics of treatment that you forget you are not only a caregiver. Before cancer entered your life you were primarily a partner, a mother or father, a sibling or friend to this particular person. He or she will almost certainly value the effort you put into the treatment process, but this is not what your loved one will want most of all. So be very aware of when you wear your caregiver hat, and when the two of you need simply to put your heads together.
It will help to ask your loved one these important questions at the start of treatment, and to revisit them occasionally to make sure you stay on the same page.
This last question represents a very charged issue. Dr. Harmon mentions, “Some patients want to go to Timbuktu for a chance at a couple more weeks of fighting, regardless of cost or hardship. Some want to stick with what’s tried and true, and if that means letting go sooner then that’s honestly fine with them.” At the start of treatment your loved one may simply not know where he or she stands. But it’s key you convey that an awareness of this comfort level, of where he or she fits into this spectrum, matters as you move forward together.
The most important thing you can do for your loved one is to readily accept that he or she may not share your opinions, your spiritual needs, or your thoughts on the best course of treatment. In order to get through this process as comfortably as possible and with the best chance of success by any definition, he or she will need every available ounce of strength. Instead of diverting this strength into ideological battles, bolster it by supporting his or her choices and by protecting his or her wishes at every turn. Making a commitment to this kind of support early on will bring the two of you closer together and will help ensure that you’ll both keep communicating honestly throughout the process.
Then I asked Dr. Harmon what actions caregivers could take to make treatment more comfortable and more successful, he responded simply, “Show up. It helps tremendously, I think, to have someone share all of this, to understand that this treatment will be difficult.”
He also clarified that much of what doctors can do to facilitate involves getting to know the patient and his or her limits. — In working with Dr. Harmon during Ariel’s treatment I learned that physical oncologists form important bridges between patients and their other specialists, and also between time in the hospital and time at home. It’s vital to work with a physical oncologist who shows strong fluency in treating exactly the sarcoma that your loved one faces, and who will provide the continuity and supervision that this highly involved process will require.
A big part of finding the right sarcoma team for patients who may not live near a globally respected center, Dr. Harmon suggests, is working within the limits of “logistic feasibility. If I was in that situation,” he says, “I would call the best specialists I knew and I would ask them for the names of the best specialists they knew. Then I would call those specialists and ask them the same question, and so on until I found the people I felt really comfortable trusting.”
Dr. Harmon has also observed some attitudes that he feels hinder caregivers’ ability to help. “Withdrawal and abandonment,” he says, are fairly common impulses especially when a child is ill. “Overdoing it, refusing to accept reality and trust the professionals,” he adds as a caveat for caregivers of patients at any age, “will really drive the pros nuts and keep them from doing their jobs.” While it’s important to question, it’s also crucial to find a team you trust and then work with them as actively as possible.
“Absolutely I think it helps,” Dr. Harmon states, “to have someone there with you, through this whole thing.” When I asked him what he thought might help prepare caregivers for the unique challenges of supporting someone through sarcoma treatment he replied, “Find some meaning in suffering – people do this in all kinds of ways. Draw strength, if not from some higher power, than from those around you… I have seen some horrific medical scenarios made bearable by the goodwill of just a few caring people.”
A Closing Quotation “Do not seek to control the river – at that you will fail. Merely seek, through yielding, to guide its flow.”
V1N5 ESUN Copyright © 2004 Liddy Shriver Sarcoma Initiative
|
