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A lot of people think that cancer caregivers are just there to drive folks back and forth to cancer treatment. You can call a taxi driver for that service. A real cancer caregiver is much more than that, and it’s important to understand what a vital role he or she plays.

Cancer is a scary disease, no matter how you look at it. From the smallest skin cancer to the biggest malignant tumor, the psychological impact of cancer can often do almost as much damage as the disease or its treatment. That’s why good cancer caregivers have gumption.

What’s gumption? It’s common sense, initiative, shrewdness, courage and resourcefulness. These are all the good qualities for a cancer caregiver. You look for ways to help your loved one navigate the cancer maze. Your confidence and faith that you can make a positive difference can often inspire your loved one to try a little harder to survive. It’s not about fooling your loved one into believing that survival is possible. It’s about convincing your loved one that life is still going to be okay with cancer, no matter what the outcome. That takes gumption.

Good cancer caregivers know that they’re afraid for their loved ones, but they also know that they should step up to the plate and be a rock. It’s about understanding that you’re the shoulder to cry on, the one your loved one counts on to be steady and sure. When you have your own doubts, you take them elsewhere, because you know that your doubts will be a burden for your loved one. It’s not that you don’t worry, because you always do. It’s that you share your fears with others, because you understand that you need to be the strength for your loved one.

Gumption makes good caregivers take advantage of the good times and make them better. Cancer changes everything, so finding the simple things to celebrate requires true spirit. You have to make excuses for enjoying life — it’s a beautiful day, it’s a rainy day, it’s a snowy day. A cancer caregiver with gumption doesn’t care what the excuse is — he or she finds a reason to laugh, to try something new, to get out and have some fun with the loved one.

Everywhere you look, you hear people describe cancer patients as brave souls who are fighting a terrific battle. The truth is cancer patients are just human beings, doing the best they can with what they’ve got. They have moments in which they feel confident and moments in which they have doubts. If they have caregivers with gumption, that’s the kind of support that can help them through the dark moments.

You don’t have to be perfect to be a cancer caregiver, but it helps to have gumption. You’ll look for the opportunities to bring quality to life, to give comfort where comfort is needed and courage when courage is needed, to encourage laughter and love to fill the tiny cracks that form in the heart from the pain of having cancer. The truth is we’re social creatures and having partners to help us on difficult stretches of the road of life matter. No one should ever face cancer alone. That’s why good cancer caregivers have the guts to step up and step in to make a difference in the lives of cancer patients. We’re smart enough to know that if the shoe were on the other foot, we’d want this kind of support.

One of the toughest obstacles to overcome when a loved one has a serious disease is sometimes the chronic boredom that results from being stuck in bed. Whether adult or child, it’s hard to keep the brain interested and motivated in everyday life. As time goes on, it becomes easy to just let the hours pass by. After all, bedridden people are sick, so they should just languish there, parked in front of a TV, taking it easy.

The problem with that is people tend to give up — first on their own lives, and then on the world in general. Boredom can mask depression, and depression can take the fight out of any human being. When a person loses interest in learning, it’s a signal that there is less interest in life itself.

Squeezing in little moments of learning throughout the day, especially for children with cancer, can keep an interest in life active. Real learning peaks curiosity, and curiosity spurs learning. Why are things the way they are? How do things work? Challenging the mind to figure out puzzles sends a strong message. There are still mountains to climb, seas to explore, even if it all happens in bed.

As an educator, I have always been of the mindset that learning should be fun and that the more fun it is, the more we learn. Why? Because it sweeps us up and carries us along by momentum. We get into the flow of a discussion and we turn our brains on. We want to participate. We want to share. It takes us out of ourselves and makes us a part of a bigger group, providing socialization. And socialization is a very big part of staying involved in life. The more connected we feel to our fellow human beings, the more intertwined our lives are.

How do you, as a cancer caregiver, keep your loved one interested in learning, especially during chemotherapy? Anyone with “chemo brain” can tell you how hard it is to focus on details. Even people who were wizards of crossword puzzles often stumble during chemotherapy. Does that mean your loved one should stop trying to do the crossword puzzle? No. It means sometimes, when a word is on the tip of the tongue, but the brain can’t call it up, having a dictionary handy can help. It means using a pencil temporarily, instead of a pen. It means that when you play Scrabble or Bananas with a loved one affected that way, you turn the game from a competitive activity to a cooperative one. You play together, side by side, and make the challenge about your loved one succeeding. The reality is that sometimes chemotherapy is a handicap to thinking.

Children love games, and some favorite childhood choices are still easy even during cancer treatment. Many adults think that children’s games involve a lot of equipment and time. Some of the best games to play with children are the simplest, especially during chemotherapy. For example, “I Spy” is a verbal and visual game, with no pieces to move. All it takes is for the leader to look around the room, find one item, and decide that is “it”. He or she says, “I spy with my little eye something….” and includes a one-word description. The item could have a particular color or shape or size, something that leads the players to look around their surroundings and guess. It forces them to become better observers. You can even play “Simon Says” with a child in bed. You just scale it down to what the child is capable of doing. “Simon says wink your eye. Simon says make a funny face. Pat your head….” Playing games means being mentally active. Give a direction and it stimulates the brain. Suddenly, the whole body is paying attention to the activity, not the cancer.

That’s the real key to helping someone stuck in bed because of a serious illness. When the flesh is weak, the mind can become a strength. It can take you out of your surroundings, out of your trapped body, and put you in a novel situation. Travel documentaries can broaden anyone’s horizon, but never more so than when a person is confined to a recliner or bed. Learning about an exotic country, culture, animal, or environment provides viewers with an opportunity to see a hidden part of the world that would otherwise be passed by. Suddenly, we wonder about a particular island on the other side of the world, a unique way of life, a jungle cat that is rarely observed in the wild, or a mountain that is covered by snow for most of the year. That helps people who are stuck in bed to transcend the routineness of their everyday existence as patients in favor of embracing another view of the world. It becomes a kind of freedom.

When a person is limited physically by disease, it can feel like he or she is trapped. The four walls that surround him or her can begin to feel like a prison, and if the disease is serious enough, it can feel like a life sentence. That’s why it’s important for cancer caregivers to understand that loved ones sometimes need gentle encouragement to rise above those constraints, whether children or adults. So often caregivers see a loved one resting and the inclination is to not interfere, to not disturb. And yet, sometimes having an interesting discussion or some hearty belly laughs are just what the patient needs to feel a little less lonely, a little less stuck.

Don’t be afraid to liven things up for your loved one. Watch an interesting TV show together once in a while and talk about it. Pick up a book or magazine and share it. Play a game together. Promote the idea that a loved one with cancer is still a vital human being with something to offer the world and then find ways to help your loved one be that person. Help him or her to rise above disease by utilizing the mind, because that is where we all find hope, and without hope, we often miss the opportunity to find life. Cancer patients need to live their lives as actively as they can, even if they have to do it in bed.

I’m a firm believer in palliative care, especially for cancer patients. I also believe in the virtues of hospice. But truth be told, sometimes the best thing a cancer patient can do is survive the day. Why? Because every day, cancer researchers are making strides. If you’re a caregiver for a lung cancer patient, you know the serious nature of the disease, especially in the later stages.

New drugs are constantly coming on the market to treat various forms of cancer. Recently, several media organizations ran articles on a new lung cancer drug by Pfizer to help certain patients. Here’s the Wall Street Journal’s article on crizotinib:

http://online.wsj.com/article/SB10001424053111903352704576538683370950462.html

What percentage of lung cancer patients can benefit from normal chemotherapy? Sadly, only about 10%. But according to published reports, researchers identified an ALK gene in 3-5% lung cancer patients. In a drug test, those with the ALK gene got crizotinib and the results were impressive in tumor reduction — 60% of the 82 patients benefited.

Why does it matter that more than half of a small group of patients saw their tumors melt away? These are people who lived another day, whose lives were continued. Where there is life, there is hope. Where there is hope, there is opportunity. Sometimes the biggest obstacle for lung cancer patients is the fight to overcome the fear and depression of living with what is, in its later stages, a terminal illness. Every little bit brings us closer to a cure, and with it, the promise of a better tomorrow.

If you would like more information on cancer caregiving, visit The Practical Caregiver Guides:

www.practicalcaregiverguides.com

When you read the word “serial”, do you conjure up a negative response? After all, serial criminals are usually dangerous. Serial liars can be counted on to bend the truth. So, what is a serial caregiver? And are you one?

I came up with the term to describe a lot of caregivers caring for people with manageable diseases like cancer. Unless your loved one is getting progressively worse, his or her cancer is likely to be treated more than once over time. That means that you’re likely to resume most, if not all, of your normal activities when your loved one’s cancer is under control, and you’ll have your life turned upside down during those times when it returns. You’ll give care during chemotherapy and take a step back when the nasty side effects fade away. The more often your loved one needs treatment, the more often your life is disrupted. Both you and your loved one will ride this roller coaster together, finding your hopes and dreams tossed over the side of the car as you go flying around the curves that cancer throws at you.

In some ways, being a serial caregiver is harder than being any other kind of caregiver, because it’s often a shock to find that the cancer has reoccurred or popped up in a new location in your loved one’s body. You have to stop what you’re doing in your own life and become a family caregiver again. Not only do you have to deal with your loved one’s disappointment, you have to deal with your own.

Serial caregivers have to deal with more than just physical issues, because with every new discovery of cancer in loved ones, there is the attached terror. Is the cancer spreading? Can it be controlled? Managed? Stopped? Cured?

It’s important for cancer caregivers to understand serial caregiving. The better you appreciate the issues you are likely to face, the better you will be able to meet your loved one’s ever-changing needs for care. Cancer disrupts life. Minimize the trauma by being prepared.

If you would like more information on issues that often arise in cancer caregiving, check out The Practical Caregiver Guides:

www.practicalcaregiverguides.com

A lot of people write blogs these days — about their favorite food, entertainment, experiences and activities, sports teams, personal philosophy of life — you name it and people write about it. But for me, it’s all about helping caregivers and their families get through what they have to get through, because I’ve been there and I know how tough it is.

But writing a cancer blog is a humbling experience for me. Why? Because no matter what I write, when I get feedback, I know that I am in the company of amazing people. Little trickles of information come through about what life is like for these people, and that tantalizes me. So many times I am left with more questions to ask.

When I wrote a blog entry to “Donna M Down in Florida”, people wanted to know how she’s doing. I’m happy to say that I took a quick peek today and she’s getting out and about, taking a boat trip and even planning a party. I wish you blue skies, Donna — nothing but blue skies from now on.

I got a comment from “Nancy” recently. “I took care of my mom who had breast cancer and two years after she died, I was diagnosed myself….” Wow. Nancy, did it help you to handle your own cancer diagnosis to have been there with your mom? Or was it harder, thinking your cancer would follow that same course as your mom’s? What worked because of your experience and what didn’t? I wanted to know because I am convinced that a big part of cancer management is all about being proactive, but I also know sometimes it doesn’t matter what you do — cancer is cancer. Nancy, if you read this and you feel like sharing, I’d love to have your thoughts on how you decided to handle your cancer, and if you’d like to tell the world, I’ll be happy to help you do that.

Another recent commentary was by Crabby Cancer Wife, married to Crabby Cancer Man, now going through his second round. She has her own blog:
http://crabbycancerwife.wordpress.com/

Feisty, funny, irreverent, thought-provoking, and yes — crabby — you can see her working her way through the annoyances of being a cancer caregiver and spouse. She’s taking her situation and using it to figure out how to keep going. She doesn’t hold back her opinions, so don’t expect pleasantries and a spoonful of sugar. My mother would have thought she was a spitfire. But you know what? If you’re a cancer patient fighting this disease, it can be great to have someone at your side who’s loaded for bear. When she takes aim at cancer, watch out!

Along the way, I’ve met so many people who have touched me with their own personal stories and experiences. Maybe that’s why it is so humbling to write about cancer. It touches so many lives. No matter where I go or who I talk to these days, everyone knows someone who’s waged the battle. We’re all connected. Read the obituary pages and you’ll read about people who have lived for more than a decade with cancer. Look at Bernardine Healy, former head of the National Institutes of Health and the Red Cross. This medical expert and educator survived two bouts of brain cancer over more than a decade until her recent death. That’s the thing about cancer. It doesn’t care who or what you are, whether you’re a liberal or a conservative, rich or poor, educated or uneducated, happy in your life or miserable. Doesn’t it make you wonder what Dr. Healy’s approach was when she first learned she had a brain tumor? How did she decide where to go for treatment, and what options were best for her? Is that how she survived as long as she did?

That’s another humbling thing about writing a cancer blog. I care about survival, but I also care about quality of life. How do you get the best treatment without being sidelined by the misery of chemotherapy? Watch how oncologists diagnosed with cancer do things. They’re out there, and if we’re lucky, they share their experiences. When they say they use palliative care to get through chemo, take note. This is something to put into your cancer arsenal. The better a cancer patient can get through chemo, without being laid low, the better the chances for a little more time. With a little more time, there’s a little more hope — for a cure, for a reprieve, for remission. That means more lives are lived and more things are happening — more people are creating, producing, making, and managing all kinds of wonderful projects that can make a difference. Will all cancer patients and their caregivers change the world? I doubt it. People are people, after all. Some are born to greatness, some are born to mediocrity, and the rest of us fall somewhere in between. But from pain often comes inspiration to be more, to do more, and to share with the world. That’s the thing about cancer patients and their caregivers. We share experiences and form bonds. We build on that to create a global community. Maybe the next comic genius is the man who survives cancer because people reached out to him. Maybe the woman who writes the next great novel does so because she had the right kind of cancer treatment and a whole lot of support to help her through it. Somewhere in the back of most people’s minds, we think about making our mark in the world. The thing about cancer is it sometimes forces you out of your complacency to be more than you ever expected to be. You reach deep and you pull out a piece of wisdom you pass on, and in return, you find wisdom handed to you in little increments that help you get through the cancer experience. You learn from the people around you and you do the best you can. It’s never easy. Writing a cancer blog is humbling, but that’s because cancer is such a tough teacher.

I met a Stage 4 cancer survivor on a cruise last summer — although our contact was limited to a couple of meals in shared company, he made a big impact on me. Why? Because Tom had outlived all predictions, beaten the odds when there shouldn’t have been any chance of winning, and most of all, because Tom was a smart, funny, personable man with a lot to offer any conversation.

Months after I returned, I thought about things Tom said in group conversations. His biggest regret? Having to retire because of his cancer. That really stayed with me. Here was a man who had spent his entire career learning the ins and outs of community banking. He had more knowledge about strategies that apply, how the little banks are often the backbone of the community, and how critical it is that customers feel that their banks are working with them, not against them.

What does a man or woman do when cancer claims a career? In many ways, it depends on the career and what adaptive tools can keep your loved one going. Often, especially with neuropathy, the loss of hand function is incredibly frustrating and limiting. In Tom’s case, I came to the conclusion that he would have made an amazing consultant to any community bank, but for the challenges of neuropathy. In a case like that, what might Tom have used to overcome the obstacle? What about voice recognition software? Not only can a user access and respond to emails, write documents, and use voice commands to direct computer actions, this technology comes standard on a lot of newer computers. From the line of MAC products to any computer, netbook, or tablet that uses Windows operating system, voice recognition is already an option. In addition, there are even apps that can be downloaded for smart phones to assist anyone with neuropathy to get around the typing obstacle.

To find out if your computer or MAC already has it, use the search word “accessibility”. Do the same for any smart phones, tablets, netbooks, or other recent products. You may already have what you need right at your fingertips.

But even better options are available, some for a fee. Maybe your loved one is too easily fatigued to hold a Kindle, Nook, or any other electronic book reader. He or she can just sit back, relax, and listen. It’s not even necessary to hold the book. If you have an MP3 player or an IPod, you can download items for your loved one’s listening pleasure. Whether it’s professional or pleasure reading your loved one wants to do, text-to-speech technology can help get it done.

If you really want to get clever, why not offer your loved one a voice-to-text tool? You can even buy software programs developed for professionals which let your loved one dictate with a minimum of mistakes. Whether it’s voice-to-text or text-to-speech, there are options that can help your loved one stay as active and productive as possible during cancer treatment and management.

What about kids with cancer? Unleashing their creativity can be the difference between a child languishing in bed and a child setting the world on fire. Whether the technologies are used to help children write school papers and keep up with homework, or download and listen to their favorite stories, how can that ever be a bad thing? The wonderful thing about children is they exist half-way between the world of make-believe and the real world. If you’ve ever encouraged a child to create a story, you know there’s no way of knowing what the end result is going to be. The process is always interesting. Hand a child the equipment that will help him or her tell a story and you may be surprised at the wonderful treasures that result. Children can do more than just school work with these programs. They can dictate emails to Grandma and Grandpa on the computer and listen to the replies that come back to them. They can even improve their reading skills when they follow the printed word on the computer screen.

Some of these also come in several languages, even the text-to-speech programs. NextUp offers so many voices and accents for its readers through its ATT Natural Voices, it’s like a walk through the United Nations.

Some people hesitate to offer up assistive technology to cancer patients, as if it will make their loved ones feel more handicapped. If you’re feeling like it would be offensive to suggest your loved one try it, consider this. Busy people already use these technologies to make their lives easier. Whether it’s writing a forty-page report or making notes on a big project that’s due, a number of working individuals are getting the job done. If it’s good enough for productive people, isn’t it good enough for your loved one? This kind of software is likely to be used by your loved one well after the neuropathy fades away. And by suggesting it, you’re sending a couple of really great messages to your loved one — that he or she still has a lot of living to do, that he or she still has a lot to share with the world, and that cancer doesn’t get to take away anyone’s voice. Whether it’s reading to your loved one or dictating for your loved one, having this can make a big difference in slipping in a little hope on that rocky cancer road. We all want to feel like we can still get things done. It’s important to self-esteem, to our view of the world, and to how we function when we are forced down by physical obstacles. Your loved one may never write the next great novel or reinvent the wheel, but he or she probably has something the world needs to hear. Why not help make that happen? Here are a couple of helpful products:

Dragon Naturally Speaking (PC and MAC versions):
http://www.nuance.com/

NextUp Text Aloud:
http://www.nextup.com/

Wouldn’t it be fun for cancer families to get together for a long summer weekend and have a cancer caravan? Whether it’s heading to the mountains for a camp-out or to the lake to board a houseboat flotilla, getting together with other people who understand what your loved one is going through can be very comforting.

How would you go about setting something like this up? First, you’d have to pick a location that has access to good emergency medicine. It’s always smart to be prepared, “just in case….” You never know when something might happen, be it an infection or a cut. If you know you’ll be able to get to a medical center within a reasonable amount of time, you’ll be able to relax and enjoy the trip more, won’t you? Take New Hampshire, for example. Lots of wonderful mountains and lakes, not to mention Dartmouth Hitchcock Medical Center. That makes it a good choice for a cancer caravan. If you coordinate with your loved one’s cancer team before you go, you can feel fairly confident that your loved one will get quality treatment,  if needed, while on vacation. Know what the procedure is before you go. Does the cancer center want you to call in first, so they can directly contact the medical center, or do they want you to provide the treating physician with the cancer team contact? Get that straight and you’ll be able to kick back.

Why go with a group of other cancer patients? There are several good reasons. First, it’s nice to be with people who get what your loved one is going through. With kids who have cancer, it’s freeing to be able to hang out without having to worry about missing your hair or feeling weak. When you’re the only kid at the party with a bald head or forced to stay out of the sun because of chemotherapy and radiation issues, it can be a lonely journey. When there’s a group in the same dire straights, you’re no longer the geek with the Big C. If you have to stay out of the sun, you at least have some good company and the chance to still have fun, whether it’s fishing or playing cards. If there are siblings, it’s nice for them to hang out with other siblings who know the deep, dark cave that is cancer, where life is uncertain and scary. And it’s nice for parents to be able to share the duties with other parents. It starts to form a mini-cancer community, where people work together to give families the fun they need.

But it’s not only children and teens with cancer who can benefit from a cancer caravan. Why not adults? Why not do a “couples weekend” or a “family fiesta” for adult cancer patients and the people who matter to them? You can also “buddy up”. Whether it’s the girls’ weekend away or a fishing trip for the guys, your loved one can bring a buddy to do the heavy lifting. Rent a group of cabins in the woods and gather there with others going through the cancer experience. Imagine your loved one being able to rest on the deck of a houseboat, shaded from the sun, enjoying the gentle breeze, the smell of the pine trees, and the chance to feel like “a normal person” again, even just for a long weekend. It’s important to factor in your loved one’s needs, especially if he or she is still experiencing the side effects of cancer treatment. Are there special nutritional needs? Is a daily nap important?

It doesn’t have to be a big, complicated process to get folks together for a long weekend. Pick a spot, invite folks to come along, and make the necessary arrangements. If you’re nervous about how it will work out, why not start with a day trip? Hold a day-long picnic party at a woodsy park. Invite folks to bring food to share. Get everyone into the spirit of the day. Foster cooperation and consideration. When you’re confident that families are ready to handle a long weekend away, get together and hash out the details.

Cancer support groups could even host trips for their cancer families, with planned activities in a safe outdoor environment, be it lake or mountains. Keep the costs down and the fun quotient up. Lots of activities don’t cost a cent. Gather round the grill or campfire at the end of the day and make some s’mores. Tell some ghost stories, sing songs, share some laughs, play charades. Watch the fireflies flicker in the woods or the shooting stars fall through the night sky above. Do it with people who share the cancer experience and build on that camaraderie. These are the folks who are part of your extended cancer family. They know your pain and you know theirs.

What can cancer patients expect to get out of a cancer caravan? How about the opportunity to see that this disease affects people in similar and dissimilar ways? And how do families benefit? For spouses who are struggling with their loved ones’ cancer, it can be very comforting to hang out with other spouses of people who are managing cancer. For best friends, it’s a chance to remember that friendship is about rising above the challenges. For families, it’s a chance to realize that you are not alone. Cancer changes how families live. There is strength in numbers. Wisdom is often passed along when people get together. And hope grows when people begin to understand what is most important in life. Live each day like it matters, because it does.

Cancer patients who have had radiation treatment know that exposure to sunlight can be risky for their radiated skin. And chemotherapy can intensify the damaging effects of sunlight during treatment. What’s a cancer patient to do while having treatment? Curl up under a rock? Hide in the house all summer long? Balderdash, I say! It’s time to get around that big, fat obstacle and have some cool summer fun!

Some cancer patients mourn the loss of their days in the sun. It’s just one more blow to endure. Family caregivers can make all the difference in the world by thinking outside the box. If the beach is out of the question, don’t let your loved one despair. There are always options.

Yesterday, I took the dog for a long hike through the forest on a hot day. The birds were singing at high noon. We were comfortable under the leafy canopy. Along side the trail, water gurgled in the stream. As I crossed the meadow, the sweet smell of grass and wild flowers filled the air. And then I reached the top of the hill, where the reservoir sat in all its glory. Blue sky, clear water, surrounded by forest — what could be more glorious? I kicked myself for not bringing my camera with me. I could have painted a wonderful waterscape back in my art studio. But even as I sat upon the reservoir wall, I took in all that beauty and thought about how much my mother would have loved this peaceful place.

That got me thinking. Cancer treatment was tough on my mother. Anyone who’s been through it knows what I’m talking about — whether it’s radiation burns or “chemo brain”, it’s always something. That’s why having a tranquil outdoor sanctuary can be a real soul saver. But how can you share a wonderful spot like this with someone who has limited stamina and can’t spend much, if any, time in the sun? How do you capture the majesty of a fine summer day for a cancer patient?

What about renting a paddle or pedal boat? Many public parks and vacation resorts offer these with Bimini shade tops. Even some aluminum fishing boats can be rented with a top. For about $15-$20 an hour, you can take your loved one around the lake. Pack a picnic lunch and bring a cooler. Some pedal boats can even seat four, so your loved one can just sit back, relax, and enjoy the view. If he or she loves to fish, go for the canopied fishing boat rental and drop a line for a couple of hours. What a great way to spend a summer day, even if you don’t catch anything.

But what about cancer patients who have families on vacation? It’s hard to do family activities with the limitations of cancer treatment, unless you get creative. Why not take the gang on a pontoon or patio boat? You can rent one of these for $200-$300 for half a day. Easy to navigate, you can even rent a tube to tow. What kid wouldn’t love an adventure like that? Some pontoon and patio boats come with luxury touches, like BBQ grills, CD/stereo players, and comfortable seating. Some are built for 6 passengers, others for up to about 18 passengers. That means you could plan a group outing and really crank up the “cool” factor. If your loved one is feeling energetic, he or she can certainly slip into the lake for a dip. But if cancer treatment has put a limit on physical activities, what could be more lovely than spending an afternoon under a protective canopy? Your loved one can dose comfortably while the rest of the crew hangs out. Whether it’s a lake in New Hampshire, New York, Missouri, South Carolina, or California, getting out and feeling connected to nature can feed the soul of a cancer patient. It’s all about feeling alive. It’s all about being a part of life. Surrounded by the people you love, comforted by the tranquility of a beautiful waterway — does summer get any better than this? 

Oh, wait. Maybe it could — there are always houseboats to rent. Now there’s an ultimate vacation for a cancer patient — spend a week on the lake, just kicking back and being free. Whether it’s a trip with college buddies, grandkids, or the immediate family, houseboats offer the chance to socialize and play on the water. Self-contained, with plenty of shade and all the necessary comforts, houseboats allow cancer patients to vacation without stress or exertion. That’s really what a summer vacation is all about, isn’t it? A little slice of paradise….

Teenagers — they have one foot in childhood and one foot in adulthood. Poised to move forward into the future, they sometimes teeter back and forth before they take those important steps. Much like toddlers learn to walk physically, teenagers learn to walk emotionally and mentally. They try on adulthood for size. Sometimes that can be very scary.

What happens to teenagers who find their lives turned upside down by cancer? How are they affected? And why is it different than what children go through?

Children often are shielded from the harsher realities of cancer and its treatment. They may know they have a frightening disease, but they often don’t have the ability to mentally conceptualize it. Their concept of disease and death depends on where they are in their development. They feel the physical symptoms and side effects deeply, but they are still young enough and vulnerable enough to reach out to the adults in their lives for comfort and support.

Teenagers often have a deeper grasp of many of life’s realities, but they are trying to move away from their parents’ rule. A certain amount of rebellion is healthy, as is an independent streak. The long road to adulthood is paved with firsts — the first date, the first kiss, the first dance, the first drive, even the first heartbreak. Teenagers know the ups and downs of life. One moment they can be floating on air as they score a field goal or belt out a show tune on the high school stage for the first time, and the next, they can be crushed by a bad grade or a bad break-up. Teenagers are filled with joy or despair, passionately, deeply, and truly, even if these emotions change constantly. They are like an unsettled weather front rolling in — you’re never sure whether you’ll see sun or clouds, whether there will be wind or rain. And those are teenagers without cancer.

What happens to those who face that diagnosis? How do they cope? What gets them through the process? And how do parents know what part of the emotions their teens experience is the result of the cancer and what part is just the normal result of reaching towards adulthood?

How do teenagers, who are so easily affected by their ever changing emotions, hang on to hope when they face cancer? At a time when they are spreading their wings and taking short breaks from the nest, when they are beginning to understand that the big world awaits them, cancer can stop them from flying. Fear can keep them from taking normal risks and exploring their new frontier.

It takes a lot of support for teenagers to go through cancer. Parents and other relatives can help. Having the chance to put cancer aside once in a while and just be a teenager can also help. It’s not always easy to help one to go through the normal rituals of these years when he or she is battling cancer. But that doesn’t mean families shouldn’t try.

When there are obstacles, it’s time to climb — over, under, or around. Sometimes enabling a teenager with cancer to live as normal a teenage life as possible can be very cathartic for the whole family. Whether it’s going to the prom with a  favorite hat on or a colorful wig in a wild color, it’s important to have the chance to attend. What happens if a teenager isn’t physically able to attend a high school prom or junior high dance because the effects of treatment prevent it? Why not hold a special event when things are better? Whether it’s a block party with neighbors and friends pitching in, a big summer pool party, or a special night at the local high school with students and teachers getting it organized, is there ever a bad excuse for  holding a celebration? Life itself is the best reason of all to gather. Teenagers need to have the chance to enjoy as many of those important milestones as they can.

What about their parents? Imagine missing the opportunities to watch sons and daughters venture out into the world. Photo albums left empty. Videos never taken. Memories never made. It’s not just teenagers who need these experiences and rituals. Parents also need to share in these moments, to recognize their children are growing up — maybe more so than parents of healthy teenagers. Cancer is a very scary disease, and having the chance to see teenagers engaging in normal activities can help parents cope with that stress. It gives them a chance to feel like “normal” parents, even if it’s just for an evening here or a day there. It’s so easy for cancer to take over a family, to consume it like a fire, sucking all the oxygen out of the room. Sometimes letting go of the disease is good for the soul.

Many cancer patients receive radiation treatments, often in addition to chemotherapy and surgery. In the best case scenario, there is little damage. Very often, radiation can alleviate pain when nothing else works. For example, when cancer spreads to a rib, a few sessions of radiation can make all the difference in the world. But with radiation, there often come side effects that warrant serious attention from family caregivers.

One of the most important side effects can be the radiation burns that result. Very often, these build up over the course of treatment. You might see an increase in redness on the skin at the sites where your loved one is radiated. It looks a lot like a really bad sunburn, and it’s hot to the touch. It can also be uncomfortable to endure. Many radiologists recommend skin creams to soothe the fragile skin. Why should you encourage your loved one to use these? Skin is vulnerable after radiation. And when it is, infection can follow.

It’s important for cancer caregivers to remember that very often cancer patients have compromised immune systems. It’s hard for them to fight off infections. Protecting the skin after radiation means lowering the risk of infection. That’s why, if the radiology team recommends a certain type of skin product for after treatment, you should not only make sure you obtain it, you should strongly encourage your loved one to use it.

Sometimes cancer patients are reluctant to involve family members in seeing the damage done by the treatment, especially if they need assistance in applying the skin product. They may want to spare you the unpleasant moments. But if you educate yourself about these side effects, you can help your loved one cope better. The cancer treatment team is there to answer questions and recommend ways to ease the discomfort of radiation burns, whether it’s itching or pain.

But what about eco-conscious caregivers? It’s tempting sometimes to substitute natural and organic remedies for products the medical team recommends. After all, if it’s just a soothing balm, there’s no real problem in substituting a natural healing remedy, is there?

Many people don’t realize that a number of “natural” products contain allergy-inducing ingredients. (As an allergy sufferer, I can attest to the number of times I’ve had an allergy attack triggered at the hair salon by a well-meaning hairdresser who thinks “organic” is harmless.) If you know your loved one has allergies, you need to read all labels before providing natural and organic skin products to your loved one.

A word of caution — Many people are unaware they have allergies, and often just think they are repeatedly suffering from itchy skin or a lingering cold. If you’re not sure about symptoms your loved one has, ask a medical professional to explain to you the difference between eczema and contact dermatitis and a cold and an allergy attack.

What is the likely outcome of using natural and organic skin products with an allergy sufferer? He or she can wind up with dermatitis, and if that becomes inflamed, the chances of an infection increase, especially if the skin breaks. Other symptoms also include breathing difficulties, runny nose, and the normal symptoms associated with allergies. For cancer patients, having a skin or sinus infection as the result of an undiagnosed allergy can be a serious complication, especially if the immune system is struggling.

What kinds of ingredients can trigger an allergy attack? Many of the natural and organic skin products use emollients from almonds, argan, coconut, macadamias, peanuts, and even seeds like sunflower. They may or may not trigger contact dermatitis, depending on the allergies your loved one experiences. Today, many products, even those not certified as organic, use ingredients like chamomile. They are in skin lotions, shampoos, conditioners, and other beauty products. Always read the label and be aware of the potential.

But there are also other potential allergy triggers, especially for skin that has been damaged by radiation. Some products use fragrance, and that can also increase itching, which often results in scratching, and that can break the skin.

Sometimes the simplest solutions are the tried and true, the products without a lot of bells and whistles. That’s why you should take the advice of the medical team on what products work best with radiation burns, and how best to use them. Don’t think that skin will be okay on its own after radiation. Do your part to understand radiation burns and how to protect your loved one from further harm.