Category: cancer

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cancer flu season immune system

Flu Season and Compromised Immune Systems

As flu season looms before us, I am reminded of how very vulnerable people with compromised immune systems are. How can you make sure that you don’t become “Typhoid Mary” or “Typhoid Marty” to someone you love?

1. Be sure to get a flu shot.

It won’t necessarily prevent you from getting the flu — there are so many strains out there. But it protects you from having a severe case, one you might accidentally pass along to someone who is vulnerable. Some treatments, like chemotherapy and steroids can knock the immune system for a loop and prevent the body from fighting off infection.

Also consider getting the pneumonia shot if you are of the recommended age. If you are caring for someone who is seriously ill and can’t get the shot himself or herself, it will be another layer of protection for your loved one.

And also remember that vaccines are important. I have had more than one cancer specialist mention just how dangerous it can be for a patient too vulnerable to be vaccinated to have to fight off a disease because he or she was exposed to a disease by a healthy, but unvaccinated individual.

2. Take cover.

Passing germs and bacteria among family and friends can wreak havoc with a compromised immune system. There’s no need to panic. Be mindful when you sneeze or cough. Don’t wipe your nose with your hand or spray everyone with your sneeze. Tuck your face into the crook of your elbow or use tissues to catch the cough or sneeze. As the old advice goes, “Say it, don’t spray it!”

3.  Wash your hands frequently.

This is especially important when handling medications and food for someone with a serious illness. Sing “Happy Birthday” from beginning to end while you scrub up. Plain soap (not anti-bacterial) and water is best for this. Rinse well.

I have a container of sanitizing hand wipes sitting on a table in the TV room, not just for my use, but also for visitors when they come. It’s easy to dab or swipe your hands when the product is available for all to use.

I have sanitizing cleaning wipes with bleach in the bathroom cabinets, so I can quickly disinfect. You can also spray surfaces with a disinfectant. Follow the instructions on the labels, to be sure you use the product effectively.

3. If you are sick, stay away.

That sounds cruel to many people, but it’s a reality for someone whose body is under tremendous stress because of serious illness. If you feel a cold coming on, you can inadvertently pass that virus to a loved one who doesn’t have the ability to fight it off.

Don’t think that it’s enough to “sit over there” and visit with a seriously ill person. You can’t control every molecule of oxygen in the room or every square inch of surface you touch. If you are in a contagious stage of a virus, or you have an infection that can be spread by contact, you can do great damage. Call, instead of visit. Skype, if you must. But don’t put someone else’s life in jeopardy to satisfy your own desire to visit a loved one.

4. If you’re not the caregiver, don’t drop in, expecting to be welcomed with open arms. Call first. Ask if it is convenient for the loved one to see you. Let her needs or his needs come before your own desires. Seriously ill patients need rest. They need to sleep. They need to conserve the energy they have and put it towards healing. You’ll often find that there are certain times of the day when they just can’t function. Their bodies are depleted of strength, or the rigorous treatments they are going through are so grueling, they struggle with everything from diarrhea to vomiting to headaches. If that is the case, send a card, a note, an email, or even a text, to let your loved one know you still care. You’re not going away or abandoning her or him. You’re merely waiting on the sidelines until such time as a seriously ill person has the stamina to engage in social activities.

And if you’re not sure what to do, ask. The patient and the caregiver often welcome company when there are good days. When you are thoughtful and considerate, you will likely shoot to the top of the “favorite guest” list, and you might even find yourself invited on a regular basis.

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

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ALS Alzheimer's cancer COPD heart disease palliative care Parkinson's serious illness

What the Heck Is Palliative Care?

For a lot of people with serious illness, palliative care is a life-saver. Find out why:

 
 
 
 
 
 
For more help as a caregiver, visit www.practicalcaregiverguides.com
 
Categories
cancer cancer caregiver metastatic cancer socialization

When the Ghost of Cancer Interferes with Ordinary Pleasures

It happens so often for people with cancer. A remission ends and the cancer returns. Sometimes it spreads to other organs; sometimes it is easily contained. But the truth is that any patient who finds a return of the disease is going to feel crushed by the reality. That’s a pretty devastating concept to wrap one’s head around.

But what happens when people who thought your loved one’s cancer had been successfully treated realize it’s back? How do they react and what impact does that have on your loved one?

It starts with the looks of pity. Maybe the hair falls out again when chemo starts up. Maybe there are visible radiation burns. Maybe it’s impossible to miss the surgical scars. People are shocked. Some are horrified. Some want to know what the prognosis is. Is your loved one going to live or not?

It’s followed by disappointment. Or horror stories of what other cancer patients have been through. Or awkward silence. Or blame, as if cancer patients somehow did something wrong to get the disease.

The truth is many people don’t know how to deal with someone else’s disease. My mom once had a friend tell her, without any sugar coating of it, that she just couldn’t handle people being sick. Given the fact that my mom was struggling with lung cancer and a host of other health challenges at the time, having a friend so bluntly reject her was incredibly hurtful.

And I’ve seen other relatives and friends have similar experiences throughout the succeeding years. I even recently heard a dear friend remark about how hard it is to go out in public, now that her cancer is back. This isn’t a case of an overactive imagination. Your loved one isn’t being overly sensitive. He or she is picking up on other people’s very real discomfort.

As a caregiver, it’s important to understand two things:

1. Your loved one will be seriously affected by the public reaction to his or her cancer. It will cause any number of reactions — anger, annoyance, frustration, sadness, depression, disappointment, or even dismay. Whatever the reaction, it will take its toll on your loved one’s psyche.

2. You cannot change human behavior with a wave of your hand, and you certainly can’t force people to behave appropriately around your loved one. There will be loving and supportive people amidst the bumbling idiots and thoughtless jerks, but it still hurts your loved one to be segregated by cancer.

What can you, as a cancer caregiver, do to help your loved one through the difficult challenges of treating a returning or spreading cancer? Take action. Know your loved one’s interests and find ways to adapt social opportunities to meet his or her cancer needs. It’s still important for cancer patients to get out and be a part of life, but realize that some situations are just too emotionally overwhelming at times. Be proactive in planning adventures.

If the local coffee shop is no longer the welcoming place where everyone knows your name, it’s time to go exploring. Plan trips to new places, to places where people don’t know you or your loved one. Go to a museum, even if you have to push your loved one in a wheelchair. Take a boat trip down a river. Find a charming new coffee shop in another town and make the trip part of the adventure. Discover a new café that serves Sunday brunch. Go to a park where you and your loved one can sit and enjoy the birds singing while you eat a picnic lunch. Go to the movies when the theater isn’t crowded. Take a stroll on a quiet stretch of beach. Go to the aquarium (which is usually dark and has plenty of observation benches) and sit for a while to watch the fish swim.

Whatever you do, don’t let this kind of thing determine what your loved one can and can’t do. Don’t let other people’s inability to cope with your loved one’s cancer deter you both from activities you enjoy together. Help your loved one continue to be a part of life, because tomorrow is promised to no one. Until that fat lady sings, keep your loved one focused on pleasure and joy by managing the environment. Keep hope alive.

Categories
cancer cancer caregiver community support

Dogs, Cancer, and Caregiving

 

It was just happenstance. I set out to put together a bibliography for readers of cozy mysteries (think Agatha Christie) that feature dogs. I did my research over two days’ time, searching various sources to come up with a respectable list of canine characters in fiction. Once I had all my information in order, I posted it to my cozy mystery library site. And that’s when it happened. Someone threw me a curve ball.

It came in the form of a request from an author of dog mysteries. She wanted me to include Susan J. Kroupa’s Doodlebugged Mysteries on my bibliography. It sounded great until I checked out the books and saw they were listed as kiddie lit. I was doing an adult bibliography. How could I diplomatically navigate this conundrum without offending anyone? I decided my best bet was to do some research. Maybe I could start a “junior cozy mystery” list. Or I could come up with a respectful reason why I couldn’t include it. I had to try to find a reasonable solution.

The funny thing was that I found a lot of adults loved the series and thought the books were well-written and amusing, with enough adult elements to make them work as cozies. They also thought the books were fun to share with kids and grandkids. But what does this have to do with cancer?

My research wasn’t done yet. In addition to providing a list of books, I also like to help readers connect to authors whose books they may enjoy reading. That meant I had to find Susan’s website. I flipped through a couple of her pages, looking at her books and bio. We had some things in common. We were both librarians at one point in our lives. We’re writers, nature lovers, and dog fanatics. Then I clicked on her blog. And that’s when I found it:

What Love Looks Like — Susan J. Kroupa

I saw that photograph of her daughter, Sarah, holding a baby. Sweet-faced. Mother of five. Colon cancer stole her away just before Christmas.

My heart sank because it’s a story I know too well. I still remember Michelle and her extraordinary battle to defeat the monster that is colon cancer. I still remember my amazing cancer friend’s effort to pour as much living into her last year of life as was humanly possible. There were so many trips, so many photographs, so many things Michelle did with her family to remind them of her unending love before she left them. Here was another young mother with another amazing family.

But when Susan wrote about her daughter’s battle with cancer and eventual death, she didn’t write about the sorrow. She wrote about the love that their community shared with the whole family. She wrote about how people came together to support them in ways that I wish every cancer family could have. It’s a wonderful testament to what we can and should do for those in our circles who are in need.

So I am sharing Susan’s link with you now, not because she wrote extensively about what to do and how to do it, but because she managed, in a very short piece, to capture the spirit of generosity that really is the face of love. This is real giving at the heart level. People got it right at the right time. They stepped up to the plate. If we could bottle this and sell it, it would be a tonic that could soothe the most discomforted soul. It will never take away the pain of losing a daughter so young, but it obviously made a difficult and challenging time less so. This is inspiration for every cancer family. Don’t give up, reach out. Ask for the right kind of help for your family, for yourself. Know what you can and can’t do realistically and don’t be afraid to say you need more help. Susan can tell you what happens when you recognize that need and people respond.

You never really know what lies beneath the cover of a book until you open it and read. Everyone has a story. I’m glad I was curious enough to learn more about an author and I’m glad to share this with you. Maybe someone else’s life will be made better by the story of Susan’s daughter because readers like you will see the possibilities and act. Don’t be afraid to be the love.

Categories
cancer World Cancer Day

How I Spent World Cancer Day

I admit it. I was doing other things than posting about World Cancer Day on February 4, 2016. I know I probably should have gotten out there and generated a lot of publicity for the event, but the truth is I was busy doing other things.

It’s not that I didn’t think about cancer. Cancer is never far from my mind, not with all the people I adore who are in various stages of treatment and disease management. To them, it’s an everyday thing. Cancer is never far from their thoughts.

No, I spent World Cancer Day out of the loop. For me, it was much more important to find out how a friend’s sibling was doing after a stem cell transplant. What had changed for him in the months since he underwent the grueling process? Was he finally getting back to doing what he wanted to do, live his life? Had there been drawbacks to the treatment? Had there been benefits? I listened to my friend talk about what was still difficult and what was now easier. The one thing that really stood out was the growing closeness between siblings as they bonded during the caregiving process.

But I also spent time thinking about another friend, a long-time cancer survivor who has spent years reaching out to everyone, using yoga to do it. In the years since we first met, she seems to have grown a heart as big as Cleveland, embracing people in arms that seem to stretch across the miles, welcoming the shy, the reluctant, the hesitant into her circle. That’s a beautiful thing to see.

And I was glad to see another cancer friend, who has spent the last year in a fierce struggle to find the right treatment that would not only prolong her time on this earth, but also give her the quality of life she so rightly craves, engage in normal pursuits. No longer do all her FB posts now involve her disease. She is getting back to her passions, making beautiful music again and teaching students who will go out into the world and make it better.

But it’s not necessarily the same for another friend, one whose breast cancer has spread. Instead of having the time and energy to reach out to all those other breast cancer survivors who count on her sage advice, she is spending her days at the cancer center and her nights recovering.

I also thought about the friend of a friend, a woman I know only from her very sweet, compassionate posts in a cancer circle. She’s been so quiet lately. It’s hard not to worry about her. Only last year, she was enthusiastically planning a flower garden.

And I thought about a recent loss, about someone I loved who was hit smack dab in the face with a diagnosis of pancreatic cancer. We thought we might have a few months with her. I had already begun to think of ways I might help her, what I could do to support her. Before I even had the chance to start, she was gone. We call that “dying from complications”, but any way you look at it, it’s cruel. We don’t really get to say goodbye the way we wanted to, planned to, expected to, all because life was snatched away in the blink of an eye.

And that is always followed by the aftermath, the grieving period. On the one hand, you tell yourself, she could have spent months suffering. On the other hand, it was quick, merciful. We wish we had more time. We wish we could just rewind our lives for some extra moments to remember.

So, my apologies to all the entities who reached out to me to promote World Cancer Day. The truth is cancer was never out of my thoughts. I am grateful for the progress in cancer treatment that has helped some of my friends and relatives get back to the business of living. They are still here, still amazing me. But I wish that there was greater progress for all cancer patients. The current expectation that one out of three people will get cancer at some point in their lives is a frightening one. It means we all know someone with the disease. But there are also more than a hundred different types of cancer. We should always remember that not all cancer is the same. Some types are curable, some are well managed over time, and some come like thieves in the night and steal the lights that illuminate our lives, leaving us in darkness and sorrow.

But above all, when we think of cancer, we should never forget that people are not their disease. The next time you look at someone with cancer, remember to see beyond the ravages of the illness. Look into those eyes and see the soul. Get lost in that wonderful smile. Let the music of laughter set your heart on fire. Some people will survive their cancer, some will not. But as long as they are with us, there is life. Live it in spite of the cancer. Don’t hold back. Don’t be shy. Don’t hesitate. Tomorrow is promised to no one. There are no guarantees. Be here now and recognize the good in every moment, but do it with a circle of like-minded people who know how precious life really is. Never take it for granted. Never assume there will be other opportunities to get around to saying the things that are in your heart, in your head. You never know when things might turn bad.

Then again, sometimes things turn good and because you lived in the moment and spoke the truth about what matters most to you, you are that much closer to being the person you want to be — not defeated by cancer, not destroyed by cancer, but made whole by the wonderful people you have had the chance to meet on the road. And they are so much more than their disease. Cancer will never take that away from them, even if it takes them away from us.

Categories
cancer immune system infection

Avoiding Crowds with a Weakened Immune System

It’s funny how many times normal life as I know it gets interrupted by cancer. Whether it’s a friend whose epic battle rages on, through brutal chemotherapy regimens, or someone I love getting a devastating diagnosis on an undetected and very lethal type of cancer, it seems like every time I turn around, that beast is going after the people I care about in this world.

This is the season of celebrations, of holiday parties, joyful gatherings, and family times. For most of us, it’s something to look forward to with delighted anticipation. But for someone who has an immune system weakened by cancer treatment, it can be a royal bummer.

Why? The minute you’re told you can’t go out to the movies or eat in your favorite crowded restaurant, what little fun you have in your life evaporates. When you hear that you need to avoid the general public, it’s heartbreaking. It’s the equivalent of being sentenced to solitary confinement in a dreary jail cell.

Or is it? That subject came up recently in a cancer circle. How can you have any fun if you’re stuck at home? You might be surprised.

Having spent some time working with hospitalized kids in the pediatric wards of a couple of hospitals, I saw firsthand the value of keeping bedridden patients engaged in having fun. Why shouldn’t adults benefit from the same strategy? Laughter makes us feel better. Playing keeps our spirits light. When we’re having a good time, we aren’t thinking about what cancer is taking from us. We’re thinking about what we enjoy. That’s great medicine for our psyches.

When my mom had to lay low, we brought the fun to her. We had movie afternoons and evenings that were great fun. She loved movies, so we got her premium movie channels for the TV and got her a subscription to Netflix. Sure, she could watch the movies by herself, but the truth is my mother was a social butterfly. There was nothing she enjoyed more than watching them with other people, so we made it an occasion.

When she couldn’t go out to dinner in a crowded restaurant, we brought dinner to her and made it a festive occasion. When she couldn’t mingle with other customers at local stores, we made sure she got to choose what groceries she wanted us to bring home. And sometimes, just because she was going bonkers staring at the same four walls, we went for long exploratory drives that took us on the roads less traveled.

People who are facing the serious challenge of wonky blood counts and suppression of the immune system during treatments still need to have social lives. They still need to feel like they belong to the living world. That’s why, as cancer caregivers, it’s important that we make fun happen for our loved ones.

Whether you read a favorite book to a loved one whose hands are challenged by neuropathy or you get together in the kitchen to prepare a favorite meal, think outside the box. When the outside world seems to pose a great risk, open up the house and let the sun shine in. What’s wrong with inviting a few friends over for a game of cards or dominos? What’s wrong with picking up a tasty meal to share with family?

The important thing to remember is that life is always supposed to be fun, and never is this more important than when cancer snatches away our loved ones’ quality of life. As cancer caregivers, it’s our responsibility to address the psychological aspects of such a blow. We want our loved ones to remain invested in life. The last thing we want is for them to feel all the good times are gone and despair is all that lingers on. Without fun activities, the hours drag on and on, pulling down the fragile spirit of someone challenged by cancer and its treatment.

Make an effort to lift your loved one’s spirits by making home, sweet home even sweeter. Know what your loved one enjoys and make it happen at home. No one wants to be alone, like some sad, little bubble boy encapsulated in a plastic sphere, forced to play alone while everyone else has playmates. Keep plenty of hand sanitizer at the ready, wash your hands frequently, and make sure all visitors know that no one should come who might have a cold, the flu, or any other virus. You want your loved one to be safe, so take simple and smart precautions. And then open the door. Invite the laughter, the love, the joy into the house. Make your loved one part of all the action, at a pace he or she can handle.  Build on the moments that make us feel connected as human beings. Respect your loved one’s endurance level. It’s amazing what that will do for the human spirit. It sends the message that life goes on, even with the challenges of being vulnerable to infection. That means cancer doesn’t win this one. Cancer is not in charge of our inner children. We are.

Whether you host a party to trim your tree or invite folks over to spin a dreidel, give your loved one the chance to be involved. Bring the joy of the season home. Don’t be afraid to go hog wild. Don’t worry about overdoing the lights, the festive music, the food. Better to have too much fun (is that even possible?) than not enough. Celebrate!

Categories
American Cancer Society free wig program cancer Pantene Beautiful Lengths hair donation

A Bad Hair Day Is Always Better Than a Bad Cancer Day

I’m not known as an impulsive person. I’ve been known to analyze and over-analyze things to infinity and beyond before making a decision. I rarely ever just “go with the flow”. I like to know the lay of the land and what my options are before I commit to anything. I need to know that I can stay the course once I choose it. It makes me more than a little persnickety.

 

Some time ago, I was stunned when one of my cancer advocate friends found out that, not only had her cancer spread, it had gone big time into several organs. This beautiful, kind, sweet, talented, funny, and very smart lady was facing a battle that seemed overwhelming in its brutality. She was willing to go through procedures that would give the rest of us nightmares, just to have the chance to live longer.

It’s been a hard road for her over the last couple of months. As painful as it is for me to witness, it’s that much harder for her to endure. But she keeps looking for the beautiful in life, and because she does, she’s been a great inspiration for me. I just wish that I could take away the pain and suffering she’s experienced, the terror that chases her through the long, sleepless nights, the sorrow that fills her heart with tears.

When I found out that chemotherapy was robbing her of her beautiful long hair, I wanted to do something that would show her how much I support her through this grueling process. How could I show her that I care in a way that would be positive in a world filled with too many negatives?

I set my sights on donating my hair to a wig program. I checked out my options and finally decided on the Pantene Beautiful Lengths program. There were rules — no dyed hair was allowed. And there couldn’t be too many gray hairs because they don’t absorb dye well when the wig is crafted. I had to have at least eight inches of hair to send in. I learned that it takes eight ponytails to make one wig. That means that seven other people have to donate their hair before a woman in need gets a human hair wig. Pantene Beautiful Lengths wig donation program

Why the Pantene Beautiful Lengths program? They have partnered with the American Cancer Society to provide free wigs to women over 18 who are in cancer treatment and can’t afford to purchase one. Anyone who’s been around cancer survivors knows how quickly the bills add up when treatment starts. Cancer often not only robs you of your chance to continue working during treatment, it takes what’s left of your savings. The American Cancer Society has good information on local and national resource and support services available on its website, and that’s where you’ll find more on the free wig program.

I decided I could handle giving up my hair in a dear friend’s honor. But what would I do when it was gone? I tried to picture myself with short hair. Would I wind up looking like Ringo Starr or Jamie Lee Curtis? I spent a couple of hours trying to imagine how it all would end. I found photos of celebrities with hair styles I liked, in hopes I would somehow develop a glamorous persona during this process. But time and time again, I kept coming back to the fact that my friend was losing her hair because of cancer. She was going bald because of her (hopefully) lifesaving treatment. That trumps everything. A bad hair day for me is always better than a bad cancer day for my friend.

I took the plunge. I found a Super Cuts in a busy location, thinking that I was more likely to get a hair stylist with experience. Sure enough, Jennifer had cut hair for other hair donors. Instead of one long ponytail, she created two pigtails, which kept more of my hair on my head than I expected.

It’s been a few weeks since I went from long hair to short. If I had known how easy it would be to donate hair, I would have done this long ago. In fact, I probably would have made it an annual event. That’s why I encourage you, if you are able, to donate in honor of someone you know who is going through cancer treatment.

As much as I worried about what would happen to me after my hair was cut, it was nothing compared to what’s happened to my friend. Some days are good, some days are horrible. What she’s been through has been far more challenging than I expected.

Sometimes my friend goes “bald”, letting her hairless state speak for itself when she hangs out with people who make her feel comfortable about herself. She doesn’t have to pretend with those of us who adore her. And sometimes, when she wants to forget about cancer, she dons a wig to go out in public. If you saw her at her favorite coffee bar, you would see a glamorous lady with a dazzling smile. For those few moments, she is back to being her old self, doing what she loves to do as a dedicated “foodie” with a camera, documenting her culinary adventures. I get to travel with her vicariously as she samples mouthwatering dishes that make me salivate every time. I treasure those times on her behalf, knowing how important it is to her that she embraces the life she still lives. But in every photo she shares, there is one thing I seek — the light in her eyes. Is she finding some little smidgen of joy as she goes through her day? As much as the horrors of cancer and cancer treatment have piled up, is she still seeing the beauty in the sunset, still feeling the warmth of the sand on her bare feet, still touching the salt water as the waves roll into shore?

When it comes to cancer, it’s important to be greedy about joy. We should clutch it tightly and refuse to give it up. Joy is that one thing we can share in abundance with those we love, but only as long as we make room for it in our souls. It’s what puts a song in our hearts, a bounce in our step, and makes us still want to dance to a beautiful tune, even when our bodies are too weary to rise.

When push comes to shove, when cancer dominates a life, the only things that really matter are love and comfort. We love, so we offer comfort in any form we can — whether it’s practical advice, humor, strong shoulders that can handle the tears, or even just the chance to celebrate those too-few moments of joy that still creep into the room like a ray of sunshine on a gloomy day. When all the high tech tools of oncology and carefully concocted medicines no longer seem to push back the cancer to the corner, love and comfort are all we have left to share. We stand by those we love and we never surrender to this insidious disease. We don’t care about the lack of hair on a head. We care about the beautiful person who is still here with us and we celebrate her beauty.

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#LiveLikeMichelle cancer caregiver CTCA grief hospice

Michelle DID Win

Michelle DID win. As I join so many others in grieving the loss of this vivacious, determined, spirited young woman, that is uppermost in my mind. #LiveLikeMichelle….

She started out her life with cancer by blogging about what it was like to face such as horrible diagnosis. Wife, mother of young children, daughter, sister, and friend to so many, Michelle had no intention of allowing cancer to suck the joy out of life. She was going to beat this thing, come hell or high water. You know what? She did.

Too often we hear that people battled cancer and the cancer finally got the upper hand, resulting in death. Too often it sounds like they failed because they were weaker than the disease. The words “brave” and “courageous” can be found in obituaries in every newspaper around the globe. But battling cancer isn’t what makes someone brave or courageous. Battling the demons that stop us from living with cancer is the real test of the soul. We wage war with an enemy that steals our humanity as it marches through the human body. Cancer is a weapon of mass destruction. It terrifies us all with its mighty power, especially when it’s an aggressive, untreatable kind of cancer cell that invades. But that’s not the foe we need to fight, first and foremost.

Cancer cells destroy — that’s true. In lucky times, the right mix of treatments and drugs sometimes halt cancer in its tracks. Then again, cancer can be sneaky. Those cells can hide in the body, only to resurface at the most inopportune times. We never know which way the cells will mutate, or where they might show up next, or whether there’s a treatment that will be effective. That black cloud of uncertainty hangs heavy over the lives of cancer survivors and the people who love them. All that darkness can take its toll on the soul, drowning us in a sea of sorrow for what could have been, what might have been, what never was.

It’s easy to hate cancer, to give in and give up when we first hear that horrible diagnosis, to surrender before we’ve even begun to understand the real enemy. When we allow our fear of cancer to decide how we live our lives, we give up our personal power, self-determination, and above all, our right to choose to live our lives out loud.

Michelle taught me much about personal courage and bravery. Right up to her last few days, she fought hard to remain the wonderful young woman we adored. That mattered to her, even in hospice care. Imagine feeling like you’ve let down the people who love you because you just don’t have the strength, the energy, the power to rise above the cancer any more. You want to go on giving, but you’re just too exhausted to do it.

Michelle DID win because she allowed us to join her on her journey through a war zone where cancer is a weapon of mass destruction. Every time she was knocked down, she stood up. Every time she lost her footing, she got to her knees and then to her feet, dusted herself off, and continued on. Cancer never took that brave, courageous spirit from her. As the power of those destructive cells wreaked their havoc on her body, her spirit grew. Love became more important. Sweet moments mattered more than sorrow, more than hate. There was no such thing as an ordinary day. She chose to make her time on this earth count for something.

Michelle could have hated her life, could have raged against the unfairness of it all. She chose to encourage all of us to grab the light. She picked her path up the mountain, and in doing so, became a wise teacher. Michelle DID win.

None of us who ever had the chance to meet this dynamic, determined, dedicated young woman will ever be the same because we choose to remember and honor her. She lives on through us, through the things we learned vicariously as she battled to save her psyche and her soul against all odds. No virtual reality, no video game ever produced a fighter quite like Michelle. She was the real deal. She was a valiant warrior in a too-real war that doesn’t have a reset button.

And she did save her psyche, staying focused on what mattered even as doubt pushed at the door. She did rescue her soul from that dark, endless night by growing in power as a human being. She did become extraordinary, this woman with the soul of a warrior — not because she fought a battle with cancer, but because she lived in spite of cancer. Who would she be when the dust settled? That mattered.

Too often we see death as failure. We forget that each of us is mortal, that with every passing day we move closer to the end of our own lives. Sometimes we’re so focused on that, we forget to live. We squander our hours in meaningless activities. We hold back our unspoken thoughts, hold in our deeply felt emotions, hold ourselves off from really engaging in life. Michelle made those moments count. She was “working the room” everywhere she went, networking with hearts and minds on her crusade to make life matter. Michelle DID win.

Cancer never took the love out of her. She worked hard to make sure her children would be safe after her beautiful spirit departed from her body. She wanted her family to go on believing in sunshine, blue skies, and good times. She wanted everyone to thrive in her absence, not fall apart. You could see it in the things she chose to do. She was building memories to keep the hearts above the high water mark, to keep the souls she loved swimming when the tears came. And they have come.

Yes, Michelle’s spirit departed, but she is everywhere around us. She’s there, in the random act of a kindness shown by a stranger, in a hearty laugh that reminds us we have this glorious moment in time, in an outstretched hand when the heart is heavy. We need to recognize that same wonderful spirit in others and appreciate it, because that’s what Michelle taught us to do.

Michelle DID win. Our lives are richer for those beautiful smiles, the touching words, the moments that she chose goodness over evil, kindness over cruelty, generosity over stinginess. The world was a better place because she lived. The light she brought to this earth grew brighter as her spirit faced an enemy that wielded cancer as a weapon of mass destruction. The real enemy in the cancer fight is apathy. There was nothing dispassionate about Michelle. She cared about everything and everyone.

As we now go on facing life without Michelle, we should not think we have lost that beautiful spirit. She sowed the seeds in each of us who yielded to her joie de vivre. Her own light faded when she left us, but she lit our souls with her fiery passion for love, for life. It is up to us to feed that flame, to carry on that legacy in the way we choose to live. We honor her by remembering that apathy, disinterest, and dispassion are the real enemy. Live in the moment. Embrace love and let it fill your soul with its warmth. Seek joy and don’t stop until you find it. Demand all this from yourself and don’t take no for an answer. Burn brightly, as Michelle did, even in the face of that horrible weapon of mass destruction, cancer. Don’t let your light go out. Long after you are gone, your spirit will live, as Michelle’s does, in all the people whose lives you touch.

Rest in peace, dear Michelle. And thank you for being you.

Categories
cancer cancer recurrence

Being Extraordinary Is a Choice

I’ve heard so many cancer patients labeled “extraordinary”. What does that mean? That doing battle with cancer somehow instills super powers in those who survive?

Frankly, I think cancer is the catalyst, but “extraordinary” is a choice that some people make. I say that on the heels of learning that a wonderful young woman is yet again fighting the demon we identify as cancer and at the moment, it doesn’t look good.

She’s not the only one. Another very wise, very compassionate woman has spent years helping others to stay in the game, but now she awaits word of her fate. It looks like it could go either way. The uncertainty is unnerving.

Two very different women with one thing in common — they are extraordinary. But it’s not their cancer that made them that way. It was the choices they made when push came to shove. Cancer forced them to the edge of the abyss. Most people would have looked down, but these two women chose to look up, to believe they could climb their way past the despair. They were motivated to seek answers, to reach out for the right kind of support to keep them going, to go kicking and screaming into the sunlight, leaving the dark nights of the soul behind.

These two wonderful beings wrap their arms around their loved ones every day. They know what they have — they recognize the wind beneath their wings. But that’s not what makes them extraordinary. It’s that they still want life to be good for their social circle. They still believe in good people, good things, in a good life. That’s what they’ve chosen to see. Even as life tests them again and again, even as the sun goes behind the clouds and the rains come, they seek those sunny days and want to share them with us.

And because they do, our lives are richer for it. We feel for them. We long for a cure. We want them to be around forever. They are wise teachers. They have given us the opportunity to understand that time is finite and we should not squander it. In living their lives extraordinarily, they teach us that we are rich when we are loved and poor when we turn away from joy and laughter. Their pain is real. They cope with so many side effects and complications that knock them off their feet, but they somehow manage to get up again and fight on. They are grace under fire. They are ordinary human beings doing extraordinary things with their difficult circumstances, without magical powers or a miracle cure at hand.

Every day, some cancer patients choose to be extraordinary; it’s definitely a power they embrace by conscious effort. They turn their faces to the warmth of the sun’s light, away from the cold, bitter winds of cancer and the desolate landscape of despair. They may not make it as far as they want to go. Their families and friends may graduate without them, marry without them, even have children without them, but all that love they have invested in people over the years will live on. All of the hearts and minds of relatives, friends, and strangers they have touched will remember how they showed us that extraordinary is a state of mind that we must choose to embrace. The shadow of death cannot defeat the light that comes from living life out loud. We have only this time on earth, these few moments. Don’t waste it fretting about the unseen future. Grab the here and now and make it extraordinary.

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

Categories
cancer cancer caregiver cancer psychology caregiver education health psychology

Don’t Flee the Cancer Community! Embrace It!

Life isn’t fair. It never really was. Some people seem to live charmed lives, enjoying idyllic days and happily ever after. Others seem destined to live in chaotic times, with moments of heart-pounding terror, when everything seems to be up in the air, the outcome can go either way, and life becomes a game of chance. It can turn on a dime, when you least expect it, ruining the best laid plans.

Cancer is a terrible disease. Well, actually cancer is a label for several hundred different diseases that we call by this one name, but it’s still horrible. And the outcome, depending on the type and stage, can be positive or negative. If you think I’m talking solely in terms of life and death, black and white, you’re wrong. I’m talking about how we face cancer. Our reactions, our actions, even our inactions — they all define us. Cancer may choose among us, but how we choose to manage this disease can make all the difference in the world.

Each of us knows someone who died from cancer of one form or another. Each of us knows many survivors in varying stages. But we are human, and in that humanness, there is a tendency to want to flee the sick. Maybe it’s a survival thing. Maybe we just don’t want to be reminded of our own mortality. Inevitably, many cancer patients find their social circle growing smaller when their cancer grows larger, as friends and family sometimes turn away, unable to face the expected heartache of saying goodbye to someone presumed to be on the road to death.

Is it the bald head of chemotherapy and the pallor that makes one look like a prisoner from Auschwitz that we can’t stand to see? Maybe that’s part of it. Or is it that we can’t seem to bear the struggle of day-to-day living with cancer, the inability to eat, to walk, to function? What if that impression is wrong? What if, rather than seeing the worst of life, we might see some of the most glorious moments of human spirit and endurance? What if there’s another way to look at cancer patients that will help us to live better, more meaningful lives?

When we embrace the cancer community, it’s not all pink ribbons and “life is good”. We know that as surely as we know some people will not be cured and their lives will end too quickly, some people will manage their disease for a while and we will have those precious months and years to enjoy, and some people will survive the disease and eventually die of other causes. But when you or someone you love lives with cancer, the quality of that life becomes paramount, no matter how much time on this earth is left.

The pain of having cancer is never more apparent than at the holidays. This is the time of year we so love to celebrate, and when someone we love can’t find the energy to do normal things, it’s a tough reminder that magic doesn’t happen for everyone. This is the season of miracles and the sharp jab to our hearts might make us hesitate or turn away. But we should never turn away from a cancer patient or from the cancer community, especially at this time of year. Why? Because we might miss some of the most important lessons of spirit and courage and love.

I say this as I follow several long-distance friends with cancer. Some have found success this year. Remission is a glorious word, one we celebrated with great expectations for continued success. It makes us want to do the happy dance.

Others haven’t been as lucky. New tumors arrived with a ferocity that is both stunning and terrifying. Old treatments failed, new treatments failed, and we watched as friends fell into that black hole of uncertainty. Every time another person teeters on the edge of life, we ache, but we ache together. Every time a member of the cancer community dies, we die a little too, but we’re there for each other. There is strength in numbers.

Recently, I read a heart-wrenching message from one long-distance friend. Someone she cared about lost the battle and she raged against the unfairness of it all. She was angry. She was passionate. I took heart from her diatribe against cancer. I thought about the young woman who passed away and what she would have taken from this. To know that you matter, that you were someone special in the eyes of such an eloquent and fiery champion, who wouldn’t want that kind of friend? No one is ever really gone with so many wonderful people to insist on remembering.

But the most glorious lesson I’ve learned in recent months comes from a young mother who has faced some enormous obstacles in her cancer journey. She has young children who depend on her. She has a husband, parents, in-laws, siblings, other relatives, friends, and even strangers hanging on her every word. We follow the ups and downs of her cancer treatment with hands on our hearts and prayers on our lips. “Please let this go well for her.”

Cancer really is a soap opera of the heart. We never know when an infection might set in and spoil everything or some tiny miracle might be found as a tumor is pushed back. In some ways, living with cancer is the ultimate melodrama. Sometimes that’s where the human spirit makes the most progress, whether we want it or not, whether we’re ready for it or not.

During Christmas week, I followed the postings of this long-distance friend as she tried to pack as much fun into the holiday as she could, not for herself, but for her kids. “They deserve this,” she insisted, and she’s right. She reached out to her following, explaining what she wanted to do, asking for help to make it happen. People responded. It was more than just hopes and prayers. It was a community’s belief that good things can still happen, even when cancer knocks you on your fanny. That’s why it’s so important for cancer families to remain connected to the support circle at every stage of cancer treatment and management.

A mother really can fight tooth and nail for her kids, even as this disease continues to smack her to the ground. Why is that important? Because she still has power to change the world. Every time my long-distance friend stands up to get something for her kids, she’s stronger than the disease. Her body may not be able to support her at this moment in time. She may feel unable to do the very simple things in life. But there’s still a fighting spirit here who demands to be heard, who insists on succeeding. She is motivated by love to give her children what they most need, the very best of her, and in that effort, everyone wins.

Her children will carry these lessons with them through life. The tough times have shaped them in ways that other children will never know. Was it unfair? Absolutely. Was it painful? Without a doubt. But these children have the gift of love like no other children have it. Come what may, they will know that you keep fighting to do right by those you love. They will know that when the chips are down, you find ways to get around the obstacles. They will know that love matters, family matters, and you don’t walk away. That’s because they have an amazing mother. Cancer didn’t make her that way. She was amazing before cancer. But when the disease took hold of her body, she decided how she would live her life with cancer. She recognized that she had the power and she grabbed it, refusing to let go. Cancer would not defeat her, because her spirit was greater than a disease. And she was right. She is so much more than cancer. That is what we celebrate with her. That’s what we learn when we follow her journey. And that’s what we can apply in our own lives.

When we come together, when we share, we’re learning to help each other rise above the hardships, the brutality of cancer, to embrace what really matters and to leave behind those ordinary things that have no real value in the struggle of life over death. It’s the triumph of spirit over sorrow, of determination over despair. A cancer community really isn’t just about cancer or about living with cancer. It’s about surviving and thriving despite the cancer and about not letting cancer have the power to decide how you find the true joy in life. Fate may have brought cancer to your doorstep without your permission, but your destiny is still your own to make. Learn from the cancer community and choose wisely. Live life, love life, and love.

Wishing you all a Happy, Healthy New Year.