This video was originally published on YouTube by The Cancer Support Community on May 26, 2015 here.
This video was originally published on YouTube by The Cancer Support Community on May 26, 2015 here.
This video was originally published on YouTube by The American Cancer Society on July 11, 2019 here.
Perhaps the most common side effects of chemotherapy, and sometimes other treatments, are nausea and vomiting. This video provides tips for how to cope with these incredibly uncomfortable symptoms.
Learn more at: www.cancer.org/caregivers
This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.
Did you know that in addition to patients, caregivers may also be concerned about the cancer returning? This is called fear of recurrence. When your loved one finishes treatment and is no longer followed closely by the cancer care team on a regular basis, you may feel anxious. You’ll learn about how to manage those fears through tips on how to better cope with those feelings.
Learn more at: www.cancer.org/caregivers
This video was originally published on YouTube by The American Cancer Society on July 10, 2019 here.
When your loved one is being treated for cancer, they might be taking a number of medications. They may also take medications for other chronic conditions, like diabetes or high blood pressure. This video provides tips for organizing a medication system that is easy for you to manage.
Learn more at: www.cancer.org/caregivers
This video was originally published on YouTube by The American Cancer Society on November 5, 2018 here.
Feeling overwhelmed and juggling multiple responsibilities on top of providing care to your loved one with cancer can lead to feelings of anxiety and depression. You might feel as if the weight of world is on your shoulders. Four tips for coping are provided to help lower your stress level and better cope when times get tough. Learn more at: www.cancer.org/caregivers
This video was originally published on YouTube on March 7, 2019 by Family Caregiver Alliance.
One of the most difficult and time-consuming tasks many caregivers face is the coordination of care for their loved one. This is especially true for long-distance caregiving. This webinar will illustrate the challenges and suggest potential solutions for long-distance caregivers. Examples will be used from a case study of an elderly person facing decline and living 400 miles away from her primary caregiver.
The personal, financial, medical, social, and legal needs of the person being cared for, along with potential red flags, will be discussed in addition to tips for making these big decisions. The overall focus of this webinar will be about how to maintain the independence, dignity, quality of life, and happiness of the person for whom care is being provided.
- Recognize changes and unmet needs of a loved one with a chronic and progressive illness
- Identify helpful resources and technology
- Create an action plan to ensure follow through to improve the caregiving situation
Speaker: Ladi Markham, RN, BSN, MA, CCM Ladi Markham holds degrees in nursing, gerontology, and hospitality. Ms. Markham has worked in home care for five years and long-term care communities for 10 years. She has experience in several aspects of aging and uses them to promote wellness and high standards for the quality of life for her clients and families.
Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.
When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.
It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.
While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.
The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.
Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.
John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.
There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs. Now a partner with Patient Empowerment Network (PEN), the vast NeedyMeds database of PAPs can be searched using the link below. All you have to do is enter the drug name to discover whether or not a PAP is available.
While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.
Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.
AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”
Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.
The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.
Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.
Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:
“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”
In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.
“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”
Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.
AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.
For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.
Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”
Managing medications can be difficult to do, especially if you’re a senior caregiver. Helping someone else remember to take medications on time and work to find the right balance for them can seem like a daunting task. Thankfully, we’ve got a list of tips and tricks to help make things flow more smoothly.
Medical providers should be aware of any vitamins and supplements a person is taking. Regardless of how natural they are, they can interfere with medications and other treatments. For example, someone on blood thinners should not be taking a supplement with vitamin K. Most blood thinners work by inhibiting the production of this vitamin in the body. Taking a vitamin K supplement can negate the work of blood thinners.
Make sure to go over medication instructions with the senior you’re caring for. If they are able to, they should know the names of each medication along with dosages and what times to take them. It doesn’t hurt to type up instructions about medications so that all information is in one place and easy to access. Consider adding in what side effects they should seek help for. That can serve as a list for caregivers and seniors to check on in case of adverse events.
Set alarms to remind seniors to take their medications. There are many options to choose from. Smartphones allow you to set up reminders with different sounds each time which can help people differentiate between medication doses and other alerts. Electronic personal assistants like Alexa or Google Home can easily be used for reminders as well. If the senior you’re caring for struggles with newer technology, consider a few alarm clocks around the home.
Keeping a list of medications can help seniors and caregivers alike remember what medications are due at what time. Lists that have both a visual of what the medications look like and allow people to check off a medication dose can be useful tools. If you’re going with this kind of list, make sure that you have multiple copies. Placing one next to a pill organizer and another on the fridge can help remind people to take medication before they’ve even missed a dose.
Smartphone apps can also be helpful in tracking this information.
It’s important not to just set alarms or reminders, but check in to ensure that someone has taken their medication. It can be easy to turn off an alarm and still forget to take medication as scheduled. Following up with the senior in your life can remind them that they didn’t take their most recent dose.
Most medications do best when stored between 68 and 77 degrees Fahrenheit. Additionally, many of them need to avoid humidity, direct sunlight and more. Medications should not be stored in vehicles, on windowsills or other sunny and warm spots or even in the bathroom. Consider storing them in a cool, dry space in the kitchen or living space.
When medications aren’t stored properly, it can affect their potency and make them potentially dangerous. If you’re concerned that your senior’s medications have been affected, here’s what you need to watch out for:
If you see these signs, contact your senior’s pharmacist as soon as possible.
Set aside time each week to go through the medication your senior takes and place them into pill organizers. These can make it easier to remember to take medications as prescribed or even transport them while traveling. Some organizers can remind people to take their medications and even alert others that a dose has been missed.
A sure way to have seniors miss their medication doses is to have senior caregivers who aren’t on the same page. Without everyone being in the know, it becomes increasingly difficult to set reminders and follow up with seniors about medication doses.
Refills may come up on days where a senior is alone. When that’s the case, they may forget or be unable to pick up their refilled medications. Refills may even be due when someone is planning to be out of town. Make sure to plan ahead adequately for refills and work with a person’s pharmacist.
Compounding is a process where medication is tailored to a person’s specific needs. This can help remove any dyes a patient is allergic to or turn a pill into liquid for those who struggle with swallowing pills.
When methods to help your senior aren’t working as well as you had hoped, take some time to check in with their medical providers. Nurses have amassed a wealth of information on improving their patients’ quality of life. They are likely to have some ideas on how to make managing medications more effective.
Whatever steps you take to maintain a senior’s medication schedule, make sure that you’re communicating any difficulties with the senior’s loved ones. Family should also always be aware of any medication changes. When so many seniors rely on a variety of paid and family caregivers, it’s incredibly important for everyone to be in the loop on the storage, administration and organization of all medications, vitamins and supplements.
Susan Ashby joined the Superior Senior Care team in July of 2014 as Community Relations Manager. With over 27 years of experience in geriatric health, Susan brings a wealth of knowledge and insight to Superior Senior Care and plays an integral part in connecting consumers and communities with resources for independent living.
I’ve spent the past two years since my Mom’s death wondering if I could have — no, I’ll be totally honest with you — wondering if I should have done more. If only I had looked into clinical trials while she still met the inclusion criteria. If only I had sought out and demanded that she see an expert sooner. If only I had been more patient, more present, more supportive. All of this because no matter how much you give of yourself as a caregiver, you’re always left feeling like you could, no, should have done more. Guilt, fear, exhaustion and stress are the refrain we caregivers hear, on continuous repeat, in our heads.
But what if we could change this? What if we, collectively as a community, could provide the support and encouragement that caregivers need? What if we worked together to change the refrain they (we) hear to something more positive?
My Mom, Shirley, was diagnosed with Inclusion Body Myositis (IBM) in 2008. IBM is a relatively rare inflammatory muscle disease characterized by progressive muscle weakness and wasting. Her diagnosis came after years of our family telling her that the weakness she felt and her frequent falls could easily be solved if she just exercised more often.
Towards the end of her life she was unable to leave the house or even get out of bed. Her muscles had wasted to a point that she couldn’t move her arms or legs. She couldn’t even swallow. My Dad and I took care of her at home until she was admitted to hospice and died shortly thereafter.
The Family Caregiver Alliance reports that 34.2 million Americans have or are providing (unpaid/family) care to an adult aged 50 years or older. 48 percent of caregivers are between the ages of 18-49. This means that most caregivers are starting or already have families of their own to care for, careers to build and tend to, and other commitments beyond their role of caregiver.
Being a caregiver was hard. Literally, the hardest thing I’ve ever done. But looking back on it, I realize just how lucky I was. I had a committed co-caregiver in my Dad. I have an incredibly supportive husband who, without hesitation, agreed to move closer to my parents. I also have a great support system of friends and colleagues. Not all caregivers are as lucky. Caregivers report feelings of isolation, chronic stress, depression and symptoms of declining health. Many caregivers have no one to turn to for support and encouragement. They have no one to “cover” for them when they need a break. No one to talk to when they feel that they just can’t continue on another day.
This is why my organization, Patient Empowerment Network, is trying to grow the Empowered Patient Facebook Group. We want it to be a safe, supportive place where patients and caregivers can find the help they need, even if it’s just to swap stories or learn a new “caregiver hack” to make life a little easier. We want to work with you and for you to build a community of empowered patients and caregivers.
A dear friend once told me that we do the best we can in the moment we’re in. Maybe that’s a cop out but, having been a caregiver, I believe it’s true. The trick is reminding ourselves and each other that it’s true. I encourage you to use this community to help share that reminder and, hopefully, change the caregivers’ refrain.
 [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
I know, it’s so scary. Making a plan to cure yourself and save your life. Literally, you have the weight of your world in your hands. But not to fear. Even though there is still no “cure” for cancer, many have successfully healed themselves from the deadly disease. Be assured there have been many countless cancer survivors before you who have paved the road to recovery with hope and encouragement. We’re just here to guide you on your way.
Being diagnosed with cancer is terrifying. So finding assistance and helpful information should be easy. In this blog entry, I will be guiding you through how to create the best appropriate cancer plan for your body and your condition. Within a cancer plan are three distinct segments – a treatment plan, a payment plan and a recovery plan. A treatment plan considers all of the patient’s therapy options, including conventional care and alternative methods, to make the best informed decision per condition. A payment plan accounts for the finances and how to outsource funds to pay the inevitably heft medical bills. And lastly, a recovery plan includes the supplementary actions that need to be taken, such as changing your diet and lifestyle goals. When all three parts function together, it is intrinsic to improving the chances of survival. Effectively enforcing and efficiently keeping track of a cancer plan will help a patient progress through healing swiftly and with a greater peace of mind.
To begin, you should assume it’s your responsibility to know everything about your body and your condition. But isn’t this my doctor’s job? You may ask. Well, sadly, most doctors won’t be able to provide personal quality care because of the largely disproportionate ratio of registered oncologist to new patients. With approximately 1.6 new cancer cases each year and only 21,200 registered oncologists, there’s a dire shortage of cancer specialists in our country (American Cancer Society, 2014). It’s best if you don’t become solely reliant on your doctor. He/She should really only be there to clarify esoteric information for you. Bring out the doctor in yourself by having a cancer planner to keep all of the information pertaining to your cancer organized & easily accessible. Be prepared for every appointment by doing your own research and coming up with questions beforehand. Make the most out of the time you have with your oncologist because it may be hard to get in touch with them during off hours. Take notes of every appointment so you can keep track of how you’re progressing after each. Accumulating all the data you can possibly find will only benefit you as a patient and caregiver. All you have to do is seek and you will find the answers. And the more you know, the more you have to fight with.
The first thing to consider after your initial diagnosis is – What are the treatment options for my type of cancer? If your cancer is invasive, your doctor will strongly urge you to perform a very aggressive form of orthodox treatment as soon as possible. Be ready to be convinced to do surgery, radiation or chemotherapy. But just know that there are many alternatives on the spectrum of treatments. From surgery, chemotherapy, immunotherapy, gene targeted therapies and clinical trials, to some of the more obscure treatments such as plant extract therapies, there are just so many options available. It’s also common to integrate therapies of the conventional norm and of the alternative. For example, a patient with stage 2 lung cancer may opt to have surgery and also adopt Gerson Therapy as a supplemental treatment where they heavily regulate their diet. So how do you choose the best route? This is where the beauty of having a cancer plan comes in. Start by weighing out your different options in terms of cost, duration, side effects, convenience and the general pros and cons for each. This will help you to filter out the options that aren’t plausible for you and your family. Trust your gut feeling and narrow your list down to the top three options. Create a visual roadmap for each treatment option listing the action steps you’ll need to take in order to see this through and picture yourself after each milestone. How are you mentally, physically, emotionally and financially? Trust me when I say that you’ll have a greater peace of mind knowing that you’ve weighed out all of your options and have narrowed your focus down to the treatment plans you believe will work best for you. Trusting your treatment plan is absolutely vital to fighting your disease. Believe you can and you’re half way there.
Now how do you pay for all of this? There are ways to pay for all of your expenses when you get creative with it. Since crowdfunding has taken off in the last couple years, you’ll be surprised at how many people, whether it’s your friends or those who’ve just heard your story but have never met you, are more than willing to help your cause. You can check out platforms like GiveForward, GoFundMe or Indiegogo. For further financial assistance and direction, you can evaluate these helpful organizations from our resources list (www.familyreach.org, cancercarecopay.org, cancerfac.org, thechainfund.org). Having a cancer planner will help you to keep track of all your medical expenses in one place and stay on top of your payments. The last thing you want to worry about is all your expenses adding up and getting out of hand.
Finally as part of your recovery plan, it’s important to ask yourself what vital changes to your lifestyle choices are necessary to help you heal and strength your immune system. A breakdown of the immune system is the primary reason humans develop cancer; we must work towards recovery by building back up the immune system with nourishing therapies. There’s a bunch of research you can do on cancer fighting foods you should incorporate into your diet. There is a cancer fighting food pyramid inside of CanPlan to help you get started. What you put into your body is one of the only elements you can control in your fight against cancer, so don’t ignore the importance of it. Now to create the best plan of action to guide you towards recovery, start by keeping track of your daily diet, exercise and medications. Then at the end of the day, rate how you feel overall on a scale of one to ten and what your general mood was for that day. Do this everyday as you start to make your lifestyle changes and notice what elements are and aren’t working for you. Perhaps you noticed that running for 30 mins greatly improved how you felt for that day. Take note of this and be consistent with it in your treatment plan. The more aware you become of your body and how it reacts to certain elements, the better you’ll be able to detect any new symptoms and find ways to combat against it. Keeping track of your progress will help put you in the driver’s seat with your fight against cancer. Don’t wait around for your doctor to tell you how you’re doing. This is your fight. You control how you want it to go.
Remember, you know your body best so always honor your body and how it reacts to certain treatments. A one-size-fits-all approach, much like the plan your doctor will prescribe you, won’t work in this situation. Since there is no “cure” to cancer as of right now, you’ll have to discover the best recovery plan through experimental trial and error. We encourage you to ask for help and seek guidance as much as you can. We’re lucky enough to live in an era, and country, with unlimited access to infinite knowledge where we can freely acquire information to make a well-informed decision (just be sure to double check your sources). It’s as if we’re given all the tools we’d need to be our own doctor. Now isn’t that a progressive thought.
Often, in my observations as a registered nurse, I have seen how resilient people can be. Through the most challenging health circumstances, patients of all ages can rally and respond to support and care. But when I refer to resilience and strength, I’m applying it to the silent army known as caregivers.
In homes, in chemo suites, hospice care, and everywhere else, on a daily basis, you can find caregivers who step up in the moments when it is needed most. These carers (used interchangeably with caregivers) provide unpaid assistance to someone in need. Often family and friends, caregiving can be one of the most rewarding experiences, but also one of the most difficult. I can say that with absolute certainty, not just as a nurse, but as a caregiver for my family.
I cared for my father through his cancer battle, his stem-cell transplant, and ultimately through hospice until his passing. It was a privilege to care for him, and I would do it all over again, but I don’t say that lightly. Caregiving can involve the hardest days and can take emotional, physical, and financial tolls with no outlet to share those feelings. This is why we need to spotlight and discuss the need to #CareforaCarer.
Here are some facts.
More than half (54%) of unpaid carers don’t have time to book or attend their own medical appointments.
42 % of unpaid carers put health of the person they are caring for above their own health.
While many understand that carers play a crucial role in lives of patients, what’s less understood is the need for resources and support. A carer’s own health often suffers as a result of the stress and demands of caring for someone else.
There is help.
Through working with carer organizations, and the multi-year Embracing Carers initiative, Merck KGaA Darmstadt, Germany operating as EMD Serono in the US and Canada hopes to improve lives for carers and patients.
The Embracing Carers initiative plays a key role in raising awareness of caregiving as a global public health priority as it should be. Healthier carers lead to happier, more productive workers and better carers of patients.Here’s some more information.
Embracing Carers is supported by leading international carer organizations including: the Caregiver Action Network, Carers Australia, Carers UK, Carers Worldwide, Eurocarers, the National Alliance for Caregiving, International Alliance of Carer Organizations and Shanghai Roots & Shoots, China. It has support of many patient and physician groups around the world.
Embracing Carers Initiative addresses caregiver stresses by highlighting the unmet needs of caregivers on a global and local level, empowering caregivers to advocate for their own health and well being.
As a nurse, I often preach to colleagues that you can’t take proper care of patients if you’re not taking care of yourself, and the same goes for caregivers. It’s easier said than done, but through action and discussion, we can help support each other.
What can you do to help?
This blog was written by Linda Scruggs and originally published on Unboxed Mom here.
In recognition of National Family Caregivers Month, we are using this month’s Patient Profile to profile a caregiver. You can learn more information about National Family Caregivers Month here.
Heather Cimino’s father died in 2008. He had mesothelioma and lived only six weeks after his diagnosis. So, when Heather’s mom was diagnosed with colorectal cancer in April 2015, Heather became her caregiver. Fortunately, her mom lives just down the street so Heather can check on her regularly. “I sit with her on chemo days, visit with her, and make sure she has food,” she says. “I’m pretty experienced in this now.”
You see, this isn’t Heather’s first go around as a caregiver. Her first began in January 2012 while she was in the operating room undergoing a Caesarean section. She and her husband Nick were anticipating the arrival of their third son. Except, Heather says Nick wasn’t there. He was in the ER with a possible blood clot in his leg. Nick had been complaining of leg pain during her pregnancy, but Nick and Heather, who had been married seven years, were busy people. They had two sons under the age of five, another on the way, and both worked and attended school full time. He’d been told by doctors that the pain was probably just residual from a long-ago injury so Nick ignored it until that day when he couldn’t ignore it anymore.
The pain wasn’t from a clot. It was a tumor and, within a week, Nick was diagnosed with High Grade Spindle Cell Sarcoma. Treatment began immediately and, for awhile, things were okay. Heather managed to care for her three sons and Nick, who was confined to the first floor of their home: the tumor in his leg broke the bone so he required a walker to get around. Heather was even able to return to work some of the time so that they could keep their insurance. Despite the surgeries and blood transfusions and hospital stays and travel to different treatment facilities, Heather and Nick wanted to provide a sense of order for their boys. “We tried to make life as normal as possible,” says Heather who organized Nick’s pill schedule around her breastfeeding schedule. After eight rounds of chemotherapy and then radiation five days a week for seven weeks, Nick’s scans were good. “But then,” says Heather, “the tumors sprouted up and ten months in, he was terminal.”
Nick and Heather, who both had medical backgrounds, looked for any possible hope. “We would sit up all night researching,” she says, “but there was no good outcome.” They went to New York and tried a different chemo treatment, they reached out to facilities all over from Texas to Europe but nothing worked. So, they scheduled family pictures and made sure to get lots of photos of Nick with his sons.
Nick died in May 2013. He was 31 years old. Their boys were 1, 3 and 6 years old and Heather, who had not slept for more than two hours at a time since that day in January 2012, had no time to grieve. “It’s all a blur,” she says looking back. “I was so worried about the kids.” She put the two older boys in an art therapy class and found a church that embraced her family and offered her support. “It was like we started a whole new life,” she says.
Like many caregivers, Heather didn’t have time to think about her role as caregiver, she simply took it on and did what had to be done and it wasn’t always easy. “When Nick was sick he yelled at me a lot,” she says. At first, she was surprised by the behavior from her mild-mannered, soft-spoken husband, but one of his doctors told her not to take it personally. Sometimes the medication can cause the behavior, but so can the emotion. Heather equates it to a child who has to hold in his fears and angers all day in front of others and then lashes out when he feels safe.
While Heather would like to advise other caregivers to take care of themselves, she says it’s just not likely to happen. There’s no time and even when people offered to help, she never wanted to leave Nick’s side. But, she did take some advice from another caregiver. “She told me, ‘Smell your person, touch them, look at them, pick something to focus on so you will remember it’,” says Heather. “It will go so fast, so take the moment.” Heather says she is grateful for that advice. “Even now I can close my eyes and I can see the freckle he had between his brow.”
Remembering the moments keeps Nick’s memory alive.“He’s always there,” she says. “It doesn’t seem like it’s been that long, but it has.” The boys are 11, 8 and 5 now and all in school. Though, she is moving forward carefully so as not to overwhelm her sons, Heather has begun a relationship with a man she describes as very patient. And, of course, she’s caring for her mom. “We just keep trucking through,” she says.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
There’s a medical miracle every day, if you believe headlines on popular media sites. If you just read those headlines, cancer is cured daily, as are hepatitis C, and a host of neurological conditions. Dive into the stories, though, and you’ll all too often find the “in mice” red flag, meaning that scientific experiments have indicated that mice are having terrific outcomes from whatever substance is being touted. Humans? Not so much.
Information flows at the speed of life – thank you, Internet – but information does not always equal factual truth. Which is where fact checking comes in, and what I’ll be offering tips on here. As a journalist, I’ve hunted down confirmations on stories for years – here’s a quick primer on doing it for your own health/science literacy building.
Building your own health and science literacy is a process. Reading the latest medical science news is a starting point, but you have to add fact checking as a critical part of your learning curve. Then use the “see one, do one, teach one” method to help your friends and family build their health literacy, teaching them how to find and fact check the science news that matters – that’s how we all build healthy, science-literate communities.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.