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cancer cancer blog cancer caregiver caregiver education Must not Fear Tequila Sepulveda

Tequila’s Gift to the World — A Journey of Courage in the Face of Cancer

You will never get to meet Tequila Sepulveda. She died in the middle of March, earlier this year. But she left the world a wondrous gift, in the form of her blog, “Must not Fear”.

Must not Fear

Oh, I know what you might be thinking — you can’t bear to read the thoughts, hopes, and worries of yet another cancer victim. It’s too heartbreakingly painful to know that she failed to beat back the Beast. But you would be wrong. Tequila has left a glorious legacy. You see, she gave us lessons in how to live with cancer, how to make the best of the worst thing ever, and she did it with so much gusto, it’s hard not to feel her enthusiasm for love, family, and life.

If anyone ever embodied the concept of quality of life in the face of overwhelming odds, it is Tequila Sepulveda. Yes, she was given a diagnosis of Stage IV esophageal cancer in September of 2010, and yes, she was struck again in May of 2011 by even more disastrous news, adrenal gland cancer. You might expect that to have done her in, but Tequila was tested by many other issues along the way, including COPD and a much earlier bout with cancer that was successfully treated.

So, what will you find if you read her blog? You will find the quintessential primer on what helps a cancer patient survive against the odds. In those words she wrote, she gave us an understanding of how a person can rise above those terrifying obstacles and continue to enjoy life as best as possible, even as life slips away.

Tequila was a business analyst, and that’s a good part of why her blog is so helpful. She was constantly assessing her life, from the medications she took to the effects on her body, from her emotions to her hopes and desires. She was on a quest to vanquish the fear, and as you read back through all the many posts, you begin to understand what an amazing woman she really was. But she was made amazing by the circle that cared for her, and they were made amazing by her.

So often, cancer patients become bitter and angry with their circumstances, and the last few months of life can sometimes be full of rage, sadness, or even despair. Tequila chose not to live that way. She made a brave decision to fight the fear any way she could. And in doing so, she constantly reached out to remain connected to life. That connection is critical to quality of life. It’s what helps us understand that we can get through the painful and difficult times if we recognize the love. Tequila told us what helped her to get through her ordeal — it was all the family and friends who stood by her, who encouraged her, especially when the pain was great and she was at the point of “abysmal despair”. Heed those words, cancer caregivers. Understand what she is telling us. We can and we do make a difference when we reach out to our loved ones, when we light a candle in the darkness.

But it was more than that. Tequila was a “people person”, and even as she fought hard to battle the cancer, she worked with her medical team. She followed their advice and paid attention to what worked and what didn’t. She communicated back and forth in her effort to have the best quality of life. That’s important for cancer patients. If doctors and nurses are aware of a patient’s problems with medication, they can make adjustments. And when it’s not possible to make adjustments, sometimes they can help a patient cope. Palliative care is so critical for people managing such serious diseases. How well you feel affects your outlook on life, and even when there is no cure for the disease, comfort medicine can ease the stress.

This is a great blog to read when you’re feeling helpless because Tequila was filled with hope. Even as the cancer grew and began to take over, read between the lines. Listen to the human spirit at work. Whether it’s fretting about her vegetables, which her sisters protected from the cold, or her beloved dogs, Tequila spent every day engaged in the life around her. She was so appreciative of those who cared for her, but I suspect it was oh-so-very-mutual. That’s because Tequila was Tequila, a lover of life. She never seemed to lose her passion, her joie de vivre. She embraced everything good — chocolate, chihuahuas, wine, flowers, food, conversation, and especially time spent with those who mattered most to her. Appreciating the sweet things in life is an art, and Tequila was an experienced connoisseur.

Her words speak of more than just this mortal coil that keeps us grounded here on earth. She saw greater things beyond the fear she fought so hard to overcome. She saw the beauty in the human spirit. When you are filled with doubts, her genuine words will remind you to live in the here-and-now, to embrace the joy and use it to propel yourself above the fear, the doubts, and the anger.

There are no miracles beyond those contained within the human heart, no last-minute reprieve for Tequila or her circle of family and friends. She does die, and sadly, we know but a small portion of that loss. But that gift she left us — that we are what we are and who we are, with the power to rise above our misery –is important for those of us who strive to live life as well as possible. Her blog reminds us that cancer doesn’t always win. Tequila chose to vanquish her fear and she succeeded, by seeking out love every day she survived. She embraced it, embodied it, and encouraged it in others. And she left us with instructions that we, too, should reach out and grab it, share it, grow it. These are not empty words. By the end of her life, Tequila was a master who proved that love does really conquer all, for she brought people together in a world that is too often fractured by selfishness, self-loathing, and sorrow. Tequila was a light in this world, and even though she is now gone, that light lives on.

Categories
cancer caregiver cancer treatment holiday celebrations for cancer patients

Holiday Tips for Cancer Caregivers

If you’re a cancer caregiver, you know that cancer treatment sometimes knocks the stuffing out of your loved one. That doesn’t mean you can’t both enjoy the holidays. Plan ahead.

1. Know when your loved one is likely to be full of energy and when your loved one is likely to be dragging his or her wagon. Chemotherapy, radiation, and other treatments sometimes leave patients feeling exhausted, in pain, or otherwise debilitated. Don’t let this deter you!

SOLUTION: Plan for fun — If you’re loved one is lively in the morning, why not start a new tradition? Brunch can be a tasty alternative to a big, heavy meal at the end of the day, when your loved one is ready for bed. Brunch often includes foods that are appealing to cancer patients and have a lot of calories to keep the weight on. You can even slip in foods that are easy to eat — shakes, eggs, pancakes, waffles….

2. Know when your loved one is more vulnerable to germs, bacteria, and other things that can cause serious health threats — the immune system is already working hard, so take precautions!

SOLUTION: Plan for a safe holiday — Make hand sanitizer available for visitors, limit contact with crowds, and request people with the sniffles stay away (they can still offer video chats, phone calls, emails, and other greetings.)

If you go out and about, choose quieter, less-crowded restaurants, movie theaters, and other public spaces — take in a matinee, instead of an evening movie; have dinner in a less hectic restaurant, where you and your loved one won’t feel rushed; go for a scenic drive and take in the sights.

3. Know your own limits on how much energy you have to put into the holiday!

SOLUTION: Take as many shortcuts as you can to make it easier to entertain. Focus on having fun. Break the guilt cycle by reminding yourself that these shortcuts are because of your loved one’s needs and your own limited energy. Next year, you can go back to the traditions.

4. Know what you will do if your loved one becomes too exhausted to enjoy the activity!

SOLUTION: Talk ahead of time and know how your loved one wants to handle any emergency. If you’re at home, he or she may just want to go lie down for a bit, or may want to call it a day. If you’re out somewhere, you may want to leave. If you’re at another home and your loved one feels comfortable, you might suggest a short lie-down on a sofa or bed.

Be encouraging in presenting options. Choose the activities wisely. Surround your loved one with people who are supportive, patient, and understanding in how cancer and treatment affect your loved one. Always respect your loved one’s decision on what to do. It’s important that cancer patients feel empowered.

In the meantime, don’t feel shortchanged — be creative!

If you’re having pizza on paper plates, choose a festive design. Easy clean-up. Add napkins and colorful cups, throw up some decorations and streamers, and it’s all about the party, not the cancer.

Ask family and friends to help decorate the house, inside or out — put on a pot of coffee, sit back, and watch the lights go up.

Let others pitch in — make the meal pot luck and they can bring food and drink to share.

Focus on the conversations, the connections. That’s what really matters.

Don’t sweat the small stuff. Celebrate the good things you have in your life at this moment in time.

Categories
chemotherapy

In Defense of Chemotherapy

News stations are reporting that chemotherapy can actually make tumors grow, increasing their aggressiveness. My first thought upon hearing this was that people might unnecessarily turn away from cancer treatment on the assumption that chemotherapy does no good.

Back when I did my teaching practicum in the pediatrics department of a big city hospital, I used to sit with children who had any of a variety of ills. I met a wide range of children with cancer, from those with brain tumors to those with leukemia. Back then, the survival rate was dismal. Cancer was a death sentence. Cancer treatment was a tiny ray of hope to cut through that death sentence. In some cases, it was a little more time. In others, it was remission until the cancer kicked in again, if it did. We’ve come a long, long way since those days.

Even in my mother’s case, that chemotherapy made her life better for a while. When I recall the days before her lung cancer was diagnosed, I remember days when she could not leave her chair because breathing came with great difficulty. For months, she had complained to her pulmonologist that she was having trouble. He chalked it up to emphysema and COPD. “Put her in a wheelchair,” was his solution. It was only when an infection landed my mother in the hospital that the cancer was found. By then, it was inoperable. That’s why I defend chemotherapy as a tool. I understand the effect it had on my mother and I know she was glad for the extra time she had to prepare for the end of life.

I say that she had extra time because that cancer was inoperable. She was already dying when the cancer was discovered. She was unable to eat, weak, stuck in a wheelchair, miserable and frustrated. Without that chemotherapy, she would have died much, much sooner. And there is much she would have missed in life.

Cancer can move quickly in some cases, slowly in others. For my mother, the extra time she had to live her life allowed her to finish the unfinished things that weighed on her mind. And when she felt that the struggle was more than she wanted to continue, she chose to stop. She was lucky. She had a great oncologist who was very supportive.

So, for this elderly woman with inoperable cancer, what did chemotherapy do for the extra months of her life? My mother went from being stuck in a chair, because she couldn’t breathe, to getting out, traveling, having fun. She was able, for some months, to give up her oxygen tank, that heavy weight that constantly reminded her she couldn’t breathe. That was freedom. That was heaven for a woman who lived to eat at her favorite restaurants and to go for long drives to see the sights. It was Red Hat gatherings with the ladies and senior lunches at the community center. It was family celebrations and reunions. The chemotherapy helped shrink that cancer enough that she could breathe on her own and she made good use of the extra time.

It’s easy to think there is no point in going for chemotherapy when you hear news stories telling you that chemotherapy can make cancers grow. That’s not necessarily the whole story you need to know. Cancer is a tough disease, and in the last fifty years, there have been many, many new ways to treat the disease. Every day, researchers are working hard to find the new medications that will target it more successfully. Every day, oncologists and hematologists are tweaking chemotherapy treatments to be less damaging and more effective.

Cancer treatment is always complicated by individual needs, by how the body handles this drug or that. No two patients are the same, and the better doctors get at profiling the cancer and determining the best course of treatment based on the type of cellular and molecular issues involved, the smoother the treatment goes.

Before you consider stopping any cancer treatment, ask for information that is specific to you, to your cancer, to your loved one’s cancer. Don’t ask your neighbor, your garbage man, your cashier at the grocery store, your Aunt Gert who runs a gift shop, or even a stranger on the street. Ask your medical team, the people who are on the front lines in the war on cancer. Ask those who have seen what works and what doesn’t work over years, who have seen what happens to people who are treated and those who are not. Ask what your survival rate is without it. Ask what your survival rate is with it.

So many things have changed about chemotherapy treatments over the years. Some cancers are less aggressive than others, and over time, researchers have found that sometimes no treatment or a little treatment is better than a lot of treatment. That’s why we need good researchers. That’s why we need good studies that take a hard look at every aspect of cancer treatment. We should not fear finding the answers, even if they take us in a different direction. We need to know the truth about cancer and about its treatments.

When all is said and done, you want to survive cancer as well as is possible. You want quality of life, so you can spend your time doing what matters most to you and your loved ones. You want to manage your disease, so that it doesn’t manage you. Don’t let the news reports about chemotherapy terrify you or turn you away from chemotherapy that can make your life more comfortable and keep you active longer. Wonder, ask, demand, seek — be active in the fight against cancer because it matters, life matters, you matter.

For more help with your role as a cancer caregiver, please visit The Practical Caregiver Guides

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cancer cancer caregiver Suzanne Whang

Celebrity Cancer

People often reach out to me to share facets of their lives with cancer or with someone who has cancer. Sometimes it’s a company trying to market a product, service, or personality. Sometimes it’s a real human being with a comment that just about breaks your heart.

If there’s one thing I’ve learned, you can be as famous as all get out and still have a disease like cancer. Cancer doesn’t respect fame or fortune. It’s that fortune that cancer sometimes goes after. It can be tough to handle the price of cancer treatment, especially when you don’t have (enough) health insurance.

Ever since I wrote about Suzanne Whang’s cancer, I’ve had people contacting me. They seem to be coming out of the woodwork. Some want the opportunity to use my blog to publicize their own efforts. I am wary of people looking to make a buck on the backs of cancer patients.

I am also wary of providing opportunities to raise funds for specific cancer patients. That’s not really what I do.

When I write about a celebrity like Ms. Whang, I don’t do it because I’m looking to be her next best bud. I don’t do it to schmooze with the big fish. I do it because I have enjoyed her show on HGTV over the years and find her appealing.

More importantly, I’m impressed with her credentials, not just as a cancer patient, but as someone with a background in psychology. To me, that’s someone who has some specific tools to navigate the cancer conundrum, and I’m always curious, as an educator, of the ways that can help or hinder a cancer patient.

The reality is a lot of people have cancer. It’s often heartbreaking to hear the many, many stories. But there are sometimes moments in the lives of cancer patients that are truly inspiring. Cancer patients often share some wonderful insight on how they survived their experiences, how they coped, and what worked when they needed care.

As far as celebrities go, I’m not all that impressed with fame and fortune. I don’t think it’s going to change any cancer patient’s life to know that So-and-So went to Tahiti for a luxurious spa treatment. What I’m interested in is what gets people through those dark, lonely, terrifying times and helps them to feel involved in life again. It’s that “putting one foot in front of the other” that will make a difference in someone else’s life I care about.

The truth is I stink at political correctness. I’m not impressed with money or glamor. I’m skeptical and stubborn. I don’t want to be a celebrity. I don’t want to be a star. I want to bring a little sunshine into the lives of cancer patients and their caregivers. I want to give hope, real hope, that these are the moments in life that matter, that even when cancer strikes, it doesn’t have to take over our lives. Sometimes it’s as simple as saying, “For the next hour, I’m not going to think about cancer.” Sometimes it’s about turning your back on the scariest thing you’ve ever seen and thinking about other things.

The only time celebrity cancer can help cancer patients is when there are real tidbits of information, education, and inspiration that really have nothing to do with being famous and everything to do with spreading the word about sharing with cancer patients helpful ways to cope. Celebrities often have a public platform, and that platform can reach a lot of people.

As for me, I’m not looking to be an important cancer caregiver blogger. I’m looking for that caregiver at his or her wit’s end, trying to figure out how to help a loved one. I’ve been there, done that, and have the tee shirt, and because it’s now part of my experience, I want to make life better for those caregivers who come after me. That’s my motivation, my focus, my voice.

You don’t have to be famous to help a cancer caregiver or cancer patient. You can pass along your wisdom, hard-won though it may be. Never be afraid to reach out. Never be afraid to speak up. But most of all, never forget what it is like to be there with a cancer diagnosis, in yourself or someone you love. That’s far more important than being famous. It’s being human.

For more help with your cancer caregiving, visit The Practical Caregiver Guides

Categories
cancer treatment GE Healthcare Is My Cancer Diffferent molecular-level testing

Has Molecular-Level Cancer Testing Made a Difference for You?

Some time ago, I was approached by a GE Healthcare representative doing an outreach program on new molecular-level cancer testing. This approach tailors cancer treatment to the specific needs of each patient. The question is has this type of cancer treatment made a difference in the lives of patients?

Every cancer patient will have a unique experience, based on the type of cancer, its progression, other non-related health issues, and factors such as stress level. No two cancer patients will ever have identical experiences. I learned long ago that cancer patients can have similar experiences, and by identifying not just differences, but also similarities, cancer treatments can be improved.

Let’s be honest. In this day and age of expensive health care treatments, there is little point in using technology that costs a fortune, but has no positive gain. That’s wasteful spending. Kind of like throwing gold-flecked snake oil at a rattlesnake bite. If it doesn’t fix things or improve things, there is no point in wasting time or money to continue.

I would love to hear from cancer patients and/or their caregivers. You’re the folks on the front line in the fight against this disease. The question is this. Has molecular-level testing for your cancer or your loved one’s cancer made a difference?

Some people new to cancer may read this and think the question is silly. Anyone who has managed cancer over the years, or cared for a loved one who has, will understand the difference. Right now, every single day, the battle against cancer advances. From doctors and researchers who have the disease, we have volunteers willing to use themselves as guinea pigs for new treatments and trials. Who better to understand how to fight the war than someone who understands what it feels like and why it feels that way? When we shift from a one-size-fits-all style to an understanding that there are differences and nuances inside each cancer, we begin to match patients with treatments that are far more effective and do far less harm. Instead of just forcing a patient to undergo a treatment doctors guess might work, research begins to show improvements.

As a blogger who follows cancer research and treatment trends, I have been optimistic in the last several months that there is some serious progress in the war on cancer. Why? Because I am beginning to see reports of untreatable cancers being treated successfully. Cancers that were diagnosed as Stage 4 are suddenly succumbing to new treatment options still in the testing stages.

Anyone who has ever had cancer or a loved one with cancer knows that very often it’s the treatment that does more damage to the body than the actual cancer. Heart damage, tissue damage, and a myriad of other health issues can result. That’s why I think molecular-level cancer testing is going to make a difference in the lives of people with the disease.

I know that researchers can test blood and tissue samples. I know they can examine patients, measure results, and even chart their progress. But what does it look like from a patient’s point of view? What does it look like from a cancer caregiver’s point of view?

I remember when my mother was being treated for lung cancer. She got frustrated at times with the physical limitations imposed upon her by the disease. But I also remember the hope that trickled forth when she began to regain some of her mobility, when she could once again go out and live her life. In her case, she gained some extra months, and she put a lot of effort into making them count. She wanted to live as long and as fully as she could. I often think that’s something that cancer patients and their families share.

If you have a comment you would like to share with readers of my blog on molecular-level cancer testing, I encourage you to make it. Don’t make it just for me. Don’t make it just for GE Healthcare, one of the makers of the testing equipment. Make it for the cancer patients now in treatment and for those to come. Make it because you have a voice that wants to speak and you have insight into the situation. You and your love one may not realize it, but you have much to say to researchers about how cancer affects your life. Let them know what does and doesn’t work for you. The more that is known about how cancer treatment affects your life, the better treatments can be better tailored to help, not hurt, patients.

If you would like more help with your cancer caregiving, please visit The Practical Caregiver Guides

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breast cancer cancer advice cancer caregiver caregiver education Stage 4 cancer Suzanne Whang

What Ever Happened to Suzanne Whang?

If you’re a “House Hunters” fan from its early days, you probably remember Suzanne Whang, the host. Attractive, with a liquid silk voice, she was the friendly face of house tour voyeurs like me. Who doesn’t love to have a peek at how the other half lives? Who doesn’t want to guess which house will be “the one”? Part showcase for real estate, part study in human relations, I’ve enjoyed watching the folks who go shopping for property and I often wondered why Suzanne Whang stopped appearing.

It turns out Ms. Whang has been battling Stage 4 breast cancer. And I do mean battling. This lady has come out swinging and she’s not planning to hold back her thoughts or emotions any time soon.

You may also know Suzanne from her other gigs, as a comedian and actor. She’s done a lot of things over time. With a B.A. in psychology from Yale and a Masters in Cognitive Psychology from Brown, Ms. Whang brings a little something to the table that most cancer patients do not. So, what did all that knowledge about emotions do for her when she was diagnosed in 2006 with breast cancer? It gave her a chance to put a very human, sometimes touching, sometimes powerful, sometimes hilarious face to the disease.

I must admit that sometimes her blog is less than polite (www.suzannewhang.com) and she’s been know to use an expletive or ten, but one of the posts I read struck me hard. Her advice to those of us without cancer? Don’t give her advice about how to live with the disease. You know what? That’s great advice. If you’re a cancer caregiver, file that in your memory box. The next time your loved one snaps at you, ask yourself if you’ve strayed over that line. If you have, apologize. All the world’s best intentions are not enough to get you out of that hot water.

Which raises another important subject — are you claiming your loved one’s cancer as your own? It’s such a common mistake for cancer caregivers. It’s hard not to get caught up in the cancer frenzy when it happens to someone you love. Let’s face it. That cancer is going to change your life, too. It’s easy to think you have a vested interest in the outcome. But you always need to remember that the body with the cancer is not yours. Your job is to provide comfort and care. Your role is to support. Your purpose is to be the help mate for the person with the cancer, so that he or she can survive cancer treatment and the disease as best as possible.

People with cancer often go through enormous emotional struggles as they manage their disease. It’s not always a pretty experience, filled with pink ribbons and happy, smiling faces. Cancer is a teeth-grinding, fist-clenching experience. It’s rarely predictable in all its aspects, and that means things can turn from bad to worse or from bad to good with little notice. Uncertainty reigns in the world of cancer, and people do the best they can with what they’ve got. It’s very stressful.

Having a good cancer caregiver can help to relieve some of the stress of being a cancer survivor, but you will never be the savior of your loved one. You are on a journey together, facing a great unknown in a landscape full of darkness and light and everything in between. Err on the side of love. Be there, even when your own heart is breaking. Don’t stop living with a loved one who has cancer. Kick cancer to the curb every once in a while. Think about something else as you force yourself to walk on the sunny side of the street. Think about life, laughter, and love. Feed the heart and soul with real nourishment — starve the disease of the power to rule the roost.

For more help with your cancer caregiving, visit The Practical Caregiver Guides

Categories
AutoLITT Barnes-Jewish brain tumor cancer cancer management Cleveland Clinic laser interstitial thermal therapy Monteris Smilow Cancer Center University Hospitals Case Medical Center

Can Laser Interstitial Thermal Therapy Treat Inoperable Brain Cancer?

If you know anyone who has ever had brain cancer or cared for a brain cancer patient, you know this is a very tough situation. Depending on the type of tumor, the prognosis is often very pessimistic.

Lasers have been used to treat cancers since the seventies, but brain surgery is always risky. The idea of using heat to “cook” a tumor is not something people find easy to embrace. Is this changing with the AutoLITT system developed by Monteris, a Canadian company?

This technology is being used to treat gioblastomas and other difficult-to-treat brain cancers, especially helpful for high-risk patients. It’s minimally invasive and pain-free. Many patients are up and walking less than 24 hours after treatment.

This new treatment for brain tumors was approved for use in 2009. There are reportedly almost a dozen hospitals in the country that currently offer the technology. Among them are the Smilow Cancer Center (Yale-New Haven), the Cleveland Clinic, University Hospitals Case Medical Center, and Barnes-Jewish Hospital.

Monteris just secured $9 million in new financing, offering hope to many cancer families that their loved ones may have access to the AutoLITT treatment. As more and more doctors are trained to use the system, patients will have more and better options, even when their brain tumors are untreatable by more conventional means.

If you or a loved one have a brain tumor that has not been successfully treated, AutoLITT may make a difference in cancer management. Some patients may gain only six months, while others gain years. It’s not always easy to predict the success rate. Sometimes hanging in there means you live to fight another day. When the tide turns, it’s important to be there and take advantage of the opportunities. The good times are what help you to ride out the bad. That’s what cancer management is all about — part hope, part patient advocacy, part persistence. Quality of life is always important, and the AutoLITT system seems to work with that concept.

If you feel that you or your loved one can benefit from treatment, don’t hesitate to find out more. Tackle the issue head on and get the facts. It may or may not fit the needs of your family situation, but if it does, it’s worth considering when all else has failed.

If you want more information about Monteris and its AutoLITT system, check out their website:
http://www.monteris.com/

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If you would like more help as a cancer caregiver, visit The Practical Caregiver Guides

If you would like a free copy of my ebooks in popular formats, visit my Smashwords pages:
The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love
The Practical Caregiver’s Guide to Caregiver Support: How to Help Yourself

These are also available at Amazon, Baker and Taylor, Barnes and Noble, Diesel, Kobo, and Sony.

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cancer treatment caregiver caregiver education Dr. Robert D.Siegel Dr. Robert J. Dowsett Helen and Harry Gray Cancer Center

Where You’re Treated Matters — Helen and Harry Gray Cancer Center

I’ve heard horror stories from cancer patients and their caregivers about their experiences with cancer treatment in various hospitals and medical centers. From people being shuffled off into solitary confinement for the lonely hours of intravenous drips to a serious lack of communication on the part of medical staff with such relevant information as a loved one’s terminal condition, the list of complaints is often long and scary.

That was not my mother’s case when she was treated by the Helen and Harry Gray Cancer Center and I can prove it. After more than two years, I can still tell you a little something about the people who cared for her. That’s because they were memorable for the compassion and kindness they showed my mother throughout her treatment.

What can I tell you about Dr. Dowsett? Behind his serious demeanor lurked a good sense of humor, and sometimes he would make a wry, unexpected comment that had us laughing. He always sported a really spiffy tie, thanks to his bargain-hunting wife, also a physician. My mother loved that he appreciated his wife’s efforts to make him a “GQ” guy. If I asked about a new kind of treatment in the news, he would explain what was and wasn’t appropriate in my mother’s case. That may not sound like a big deal, but it demonstrated to me that he was up-to-date in his knowledge of advances in radiation practices for cancer treatment. That instills confidence in the patient and family.

My mother adored Shelley, the radiation nurse who checked her in on each visit to radiology. “You remind me of Meryl Streep!” she would say as Shelley took her vital signs. With a calm, patient manner, Shelley would smile sweetly, never mentioning that she was much, much younger than the Oscar-winning actress. Never rushing my mother, always supportive, Shelley was a reassuring presence during exams.

Diane was the nurse who would always stop by to say hi while we were waiting in the radiology lounge. Cheerful, approachable, she always wanted feedback on what was working and what wasn’t working. This genuine interest in helping us get my mother through cancer treatment counted for a lot. Diane, like my mother, loved good movies, and she introduced us to the joys (and convenience)of Netflix. When my mother was too ill to go out, we signed up for Netflix and she had the chance to see some really good movies.

Carl and the other “kids” in the radiology meant a lot to my mother. That’s because they always treated her with affectionate respect. Carl used to surprise my mother when he spotted her waiting for her chemotherapy. He would sneak up, appearing at my mother’s side to offer a big, friendly greeting. She was thrilled for him when Carl graduated from school and was hired as a full-time radiation tech.

Anne, the nutrition expert, was literally a life-saver. As a lot of cancer patients do, my mother lost too much weight before we were able to reverse the trend. Anne sat with us in her office, explaining how to feed a cancer patient who also happened to have diabetes. With a hearty laugh and a quick wit, she offered encouragement and sage advice, and she helped us understand my mother’s frustration with the need to eat and lack of appetite, offering positive solutions to get her back on track.

With a radiant smile and twinkling eyes, Denise was one of the kindest, gentlest people in the oncology department, which was good, because she was the one taking blood samples. I remember her as “the hugger”, who would wrap her arms around my mother and tell her how happy she was to see her again. My mother looked forward to seeing her on visits to the hospital and to receiving that hug.

Karen was my mother’s oncology nurse, always sashaying in and out of the treatment room with the patience of a saint, no feathers ruffled even on the most hectic of days. What I liked about Karen was that I could call her with a question and she would get back to me with the answer. She was always good at sharing tips about managing the side effects of the cancer drugs my mother was receiving, clearing up any confusion and helping us to know what to expect.

When Karen had a day off, Donna would often fill in, dispensing my mother’s chemotherapy drugs. A very experienced nurse, she was always available if there was a problem. I ran into her at the grocery store after my mother passed away and I felt compelled to thank her for all of the wonderful treatment she and the others provided. They made chemotherapy bearable for her.

Marcia? Oh, full of life and passionate! On her stark white lab coat, she used to add her own whimsical touches, like big, colorful buttons. Marcia, as a nurse practitioner, was the one who explained things about over-the-counter medications interfering with the chemotherapy. If one pain reliever didn’t work well enough or was dangerous on certain treatment days, she had no qualms about prescribing another. Comfort was paramount. Marcia was a problem-solver who liked things to go right for patients, so she often went out of her way to make good things happen.

Dr. Bob’s office was like a whimsical version of what a doctor’s office would look like on the Cartoon Network, and I think it defined him not only as a doctor, but also as a human being. There were illustrations done by his young patients taped up to the walls, along with a Sponge Bob Square Pants figure. The jungle-print drapes, solar-powered pith helmet, and photograph of him jogging in Africa amongst a herd of elephants were all part of a decorating blitz by Marcia and a few others in the department to celebrate Dr. Bob’s vacation in Africa. You’ve got to love a guy who does such serious work and surrounds himself with very “unserious” stuff. Dr. Bob was a straight-shooter as an oncologist. He was big on quality of life, something my mother really appreciated. Dr. Bob always treated her with respect, making it clear that it was her decision on when to say enough was enough. It made it easier for me, when her health had seriously deteriorated, to ask her if she felt she was ready to go into hospice care. As a result, we got a lot done in her final weeks, tackling the things that mattered most to her and fulfilling her wishes.

I could go on and talk about the valet parking attendants, who always hustled to get the car back as quickly as possible. My mother loved the greeter at the front desk and even the “gift shop lady”. I appreciated Dr. Dowsett’s and Dr. Bob’s schedulers. They offered appointments that fit my mother’s physical limitations and need to rest.

Does the Helen and Harry Gray Cancer Center sound to you like a scary, cold, or unfeeling place to go if you have cancer or like a patient-focused medical facility where the staff is welcoming and warm? A cancer treatment center is always more than just a single doctor or nurse. It takes many people to get the job done. With a disease like this, especially if the cancer is manageable, you and your loved one are likely to spend a great deal of time there. All the more reason to make quality of life and treatment a priority by picking a good cancer center.

For more help as a caregiver, visit:
The Practical Caregiver Guides

For a free copy of my ebook in popular formats, visit:
The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love

You can also find my free caregiver guides at Barnes and Noble, Sony, Kobo, Diesel, Baker and Taylor, as well as Smashwords.

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When Hope Fades

The hardest thing about cancer is when hope fades, when over time, there are so many complications it becomes almost impossible to stay in the battle.

Cancer can be a very tough foe. Sometimes it’s exhausting to do what is necessary to live. It’s like you’re always running in place and getting nowhere. But when you start running backwards, it’s heartbreaking, because you know you are falling behind, with no way to catch up.

I read a news report the other day about Robin Gibb of the Bee Gees, in a coma after battling what the press speculates is liver and colon cancer. What makes this most heart-wrenching is that  he declared himself cancer-free in March of 2012, after he said tests showed no signs of the disease. Over time, Robin Gibb has been like most cancer patients, running back and forth to the hospital for treatments and for medical emergencies. This time, the news doesn’t look good. Pneumonia is complicating his already precarious health situation.

It comes on the heels of the premiere of his latest musical endeavor, “The Titanic Requiem”, with the Royal Philharmonic Orchestra, written for the 100th anniversary of the sinking of the Titanic. Too ill to attend its premiere, it is a piece he worked on through his illness with his son, Robin-John. Like many cancer patients, having a goal to meet seems to have helped him cope.

When I was in high school, I scored my first super 8mm art film with The Bee Gees’ tune, “The First of May”. I recall lots of apple blossoms and sunlight in my shots. It was the first time I ever learned how to splice and edit film. Years later, I danced the night away under the sparkle of a disco ball, as the Bee Gees sang “Staying Alive”. I once even saw them in concert in Passaic, NJ. For me, the Bee Gees were a part of the good times and bad times in my life, a way to recall the memories through song.

Celebrities are often larger-than-life characters, never quite real, but when they get cancer, they become very human. That’s because those of us who have loved ones with the disease, or who have lost loved ones, know the toll on the human heart. Cancer is the great uniter. We understand the struggle, so we offer our hopes and prayers to our brothers and sisters, even those we don’t know.

Cancer sometimes creates so many obstacles that it is almost impossible for the body to make progress. Sometimes, just when you think you have the disease licked, just when you think things are turning around, those complications turn everything upside down and you get slammed into a brick wall. That’s when the soul starts to give up, to say enough is enough.

I’ve known cancer patients through the years. Some were supposed to be just fine and they suddenly succumbed to the complications of the disease. Others, who were expected to die, somehow managed to survive. It’s not always easy to predict the course of cancer on the body. Sometimes there are vulnerabilities that don’t show up on a scan or x-ray. Sometimes things happen over which we have no control.

Hope is very often the first casualty in the battle with cancer. When hope fades, things seem to quickly spiral out of control, crashing down around our feet. That’s because we need hope to find the courage and inner strength to fight cancer.

Sometimes we find hope in the strangest of places — in the words of a stranger, in a sunbeam streaming through a window, or within the heart, in a moment of sudden clarity, when we know whatever happens, it happens for the best. We’ve done all we can and it’s time to let go and let God take the helm. It’s that sense of peace that we so desperately need. That’s the sound of love rising up, reminding us that we are not alone, that there are people who love us, whom we love, enriching our lives through the darkest of days. Where there is love, there is hope that whatever happens, we will get through it as we need to get through it. Seek the peace within the heart. That truly is the music in every soul, and every soul has a song. For Robin Gibb and every other cancer patient struggling, I wish you hope, courage, peace.

UPDATE: As of April 24, 2012, the media reported that Robin Gibb awakened from his coma and was communicating with his family. Still frail, diagnosed as having advanced colorectal cancer, the singer has vowed to perform again. He’s not ready to give up or give in. Who knows? He may yet elbow that fat lady off the stage!

For more help with your cancer or home hospice caregiving, visit The Practical Caregiver Guides

For a free download of my ebook, The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love, visit my Smashwords page:
http://www.smashwords.com/books/view/110999

For a free download of my ebook, The Practical Caregiver’s Guide to Home Hospice Care: How to Help Someone You Love, visit my Smashwords page:
http://www.smashwords.com/books/view/111015

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caregiver caregiver education children's activities hospitalized children The Practical Caregiver's Guide to Amusing Sick Kids

How Do You Amuse a Sick Child?

One of the things I learned long ago is that it is difficult to keep a hospitalized child engaged and amused over time. Very often kids with serious illnesses, diseases, and disorders wind up spending long days lying in bed, in between tests, examinations, and treatments. It can be even harder when kids come home from the hospital. What are parents to do?

I just published my latest free ebook, “The Practical Caregiver’s Guide to Amusing Sick Kids”. There are tips, advice, ideas, and games galore. Whether you need a quick game to play while you wait for the doctor to arrive or you want to do some bonding with your child, this is your go-to guide for keeping your sanity. Download it for free in the format of your choosing:
“The Practical Caregiver’s Guide to Amusing Sick Kids”

If you’re a health care or home care provider, you should know that The Practical Caregiver Guides are not affiliated with any health care agency or service provider. They were written out of my passion for caregiving and the need to provide useful education that is accessible to all. That means that these guides are also available to agencies and service providers who want to help families provide better care. Just pass along the Practical Caregiver link to a family in need. Help them to work with you to keep their loved ones healthier and happier.

If you need more help with family caregiving, visit:
The Practical Caregiver Guides
For a free copy of “The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love”, visit my Smashwords page:
“The Practical Caregiver’s Guide to Cancer Care”