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The Practical Caregiver — Cancer: “I PROMISE NOT TO BREATHE ON YOU!”: “Oh, it’s cold and flu season! For most people, it’s an inconvenience to be ill, especially during the holidays. But for cancer patients, it …”

Oh, it’s cold and flu season! For most people, it’s an inconvenience to be ill, especially during the holidays. But for cancer patients, it can be devastating. Cancer treatment centers often inform patients when they are vulnerable, and it’s important for families to understand the risk posed by viruses and other threats to immune systems.

I remember being absolutely terrified when I went to visit an aunt who was battling cancer. I knew it was my allergies that had me congested, but I also needed to remember that she was very vulnerable to any kind of infection. I took precautions and worried through the entire visit. It’s hard when someone you love has cancer and you want to be there.

When my mother was actively being treated for cancer, her medical team would periodically warn us that she was particularly vulnerable. That meant we avoided crowds and cautioned family and friends to forgo visits if they were ill. But it didn’t mean life stopped for my mother. I still took her out and about, but I used some common sense. We avoided crowds. We took more drives, had more picnics, and explored the “unbeaten path”. We even went to movie matinees in quiet, little theaters, where there were only a handful of theatergoers.

There were times, however, when we had to tell people to stay away. My mother was the first to ask any prospective visitor, “Do you have a cold?” Every family invitation included that question. Very often, especially in the winter months, the answer was yes. Many a family gathering was called on account of illness.

At first, some relatives tried to be creative, because they genuinely didn’t understand the enormous risk of being exposed to viruses for a cancer patient. We often heard things like, “I promise I won’t breathe on you!” People offered to come and sit in the corner. They swore they would not hug and kiss my mother. All they really wanted was to spend time with her.

The truth is that cancer patients really need to be protected when their immune systems cannot handle the effort to engage in a battle with another foe other than cancer. And yet, cancer patients need socialization, don’t they?

Why not encourage family and friends to make video visits, through free service, like Skype? Why not encourage text messages, emails, phone calls, and even traditional cards and letters? Your loved one needs to know people care. It’s important to have a support system, and that your loved one is covered by it.

You need to be vigilant when your loved one is vulnerable. It’s a time to be protective.

Why should you make such an effort? Why does it matter? Your goal is to help your loved one have the best chance to survive cancer. Imagine how terrible it would be to put so much effort into the fight, only to lose to a common cold. Those complications are just not worthy of your loved one.

How successful were we at keeping my mother safe from colds, flu, and other threats? She was extremely lucky. She got through her cancer treatment without any problem. It was worth the effort. But there was also a positive side effect for the rest of us. Because we were so vigilant about hand-washing, sanitizing, and making sure to avoid bringing home viruses, we stayed a lot healthier, too. Not a bad way to live.

If you would like more tips on how to help your loved one through cancer, visit my website,
The Practical Caregiver’s Guide — Advice for Families Caring for a Loved One with Cancer:
https://sites.google.com/site/practicalcaregivercancer/home

The Practical Caregiver — Cancer: CANCER AND THE HOLIDAYS: “It’s hard to have cancer at the holidays. If you’re undergoing active treatment, sometimes the side effects are overwhelming. If your cancer…”

It’s hard to have cancer at the holidays. If you’re undergoing active treatment, sometimes the side effects are overwhelming. If your cancer has spread, you may be limited in energy and emotional strength. How do you face the holidays with cancer?

One thing I learned as a caregiver for someone with cancer is that you must, as a family, be flexible. Some things are what they are. If you try to continue with family traditions, as if nothing has changed, you’re likely to find your plans sadly undermined by reality. There’s nothing worse than having your loved one feel more miserable because he or she can’t enjoy the gathering.

You need to make an honest assessment of your loved one before you do any planning for the holidays. First, what is your loved one’s energy level and what affects it? If he or she is having treatments, when do the side effects kick in? You may find that if you’re planning a gathering and it’s the day that your loved one is most likely to be affected by treatment side effects, you’re going to cause more problems than you solve.

Sometimes changing the date of the gathering is more important than having it on the actual holiday. If you’re used to celebrating on Christmas Day, but you know your loved one is going to be wiped out because of chemo, celebrate on Christmas Eve or Boxing Day this year instead.

If your loved one’s energy is lower because he or she isn’t functioning as well as past years, it’s important to take this into consideration while making plans. Maybe what you really need to do is scale back the festivities this year. Make the celebration easier all around.

If you’re hosting the party, keep the menu simple, but tasty. It’s sometimes easier for your loved one to have a shorter family visit. Have the food ready to heat. If folks are used to coming at three, ask them to come at four-thirty. This gives your loved one a chance to rest before guests arrive. Instead of having lots of hors doeuvres, offer one or two choices and serve dinner twenty minutes later. Put the coffee in a thermal carafe or two, and keep your desserts uncomplicated.This way, your loved one doesn’t have to dread the holidays. It’s easier to be “up” for a party lasting two hours than one lasting four, if you have limited energy.

It’s important that family members are supportive of the game plan and that they understand the need to shorten the festivities. You’ll be amazed at how much fun you can pack into a couple of hours when you eliminate the complications.

If you’re going to a family gathering, make an effort to gently explain the needs of your loved one and work with your hosts to find ways that will allow your loved one to enjoy the party without being physically or emotionally overwhelmed. Maybe the other guests can arrive at the normal time, but you and your loved one can arrive twenty minutes before dinner is served. Sometimes having the opportunity to skip some of the party means your loved one has enough energy to enjoy the important part of the occasion.

You may, however, come upon a brick wall with a relative who doesn’t want to be flexible. Some people insist on following traditions, regardless of the needs of your loved one. In that case, you may have to explain that you just can’t do things as you would in a “normal” year.

If the big party is too much for your loved one to handle, why not ask people to stop by for dessert and coffee with you and your loved one? By arranging for the group to come to your home after the dinner, your loved one still has the chance to socialize. Let’s be honest. Dessert is usually the best part of dinner anyway, isn’t it?

The important thing you need to always remember is that cancer patients don’t want to be treated like the skunks at the party. They may need to rest more, they may not be able to cope with holiday stress as easily as they might have before cancer, but that doesn’t mean they shouldn’t be part of the party. Find ways to empower them to enjoy themselves — leave the cancer behind for a few hours and just have a good time. 

A WORD OF CAUTION — IF YOUR LOVED ONE IS VULNERABLE BECAUSE OF IMMUNITY ISSUES OR LOW BLOOD COUNTS, YOU MAY NEED TO PUT PLANS ON HOLD FOR THE HOLIDAYS, ESPECIALLY IF FAMILY MEMBERS HAVE COLDS OR EXPOSURE TO THE FLU. ALWAYS CHECK AHEAD OF TIME.

The Practical Caregiver — Cancer: IS “THE JOURNEY FORWARD” PROGRAM FOR CANCER PATIEN…: “I saw an ad in today’s New York Times for a program that is aimed at helping cancer patients after they finish active treatment. It’s called…”

I saw an ad in today’s New York Times for a program that is aimed at helping cancer patients after they finish active treatment. It’s called “Journey Forward”, part of the Wellpoint effort to improve health care for cancer survivors. Teaming with UCLA Cancer Survivorship Center, the National Coalition for Cancer Survivorship, and Genentech, they created a program that expects to improve coordination and communication between cancer patients and their oncology and primary care physicians.

The program provides tools to help patients to have the important discussions with their medical team on what steps can be taken by patients to manage the physical and emotional issues that arise for cancer survivors:

http://journeyforward.org

The goal of the program is to “…Prevent recurrent and new cancers as well as other late effects; Intervene for symptoms that result from cancer and its treatment; Coordinate the work of specialists and primary care physicians to ensure that all of a Survivor’s health needs are met.”

This means that each cancer patient will have a Survivorship Care Plan, and that will allow them to know they will continue to receive the same level of care even after active treatment of their cancer ends. Journey Forward promises to provide a bridge of care to help cancer survivors know what to expect for their future.

Components of the program include a survivorship tool kit, a medical history builder, a resources directory, and tips on talking to your doctor. This can help tremendously in understanding not only how cancer affects you, but what you can expect when active cancer treatment ends, and you’re no longer making the trips to the center.  

On the surface, it sounds like  a great idea. How many cancer patients end active treatment and then feel like they are left dangling off of a cliff, unable to climb up or safely get down? With a plan in place, with information on what to expect and signs that are critical to monitor, won’t this be a benefit to cancer survivors? There is surely nothing as frustrating as trying to figure out how to get back to living after cancer treatment. In the back of one’s mind is always the fear that cancer will return, maybe in a different location. This program appears to tackle that issue, by offering a way to coordinate not only with the oncology team, but also with the primary care physicians.

The question is how will cancer patients view this program? Would it be helpful, after you are discharged from active cancer treatment, to know that your primary care physician will participate in your care and will be part of the team that supports you? I wonder how many cancer patients hesitate to call their oncology team when they notice a little symptom pop up here and there. Would it be less terrifying to call your primary care physician for a check-up?

For many cancer patients, there are long-term side effects from treatment, and some can linger for a long time, affecting one’s quality of life as much as the cancer itself. Wouldn’t it be wonderful to have a plan on how to address these issues and help you get on with your life?

The real test of the program will be in its beneficial results for cancer survivors. As more and more patients get involved and they begin to utilize the tools, it will become obvious whether the program offers a real opportunity for cancer survivors. My hope is that it is so well-planned and so careful about the little details of cancer management that it saves lives. The sooner cancer survivors notice what isn’t right and get treated, the better. What good is surviving cancer if your quality of life isn’t improved by the treatment? I hope this program does that.



“Now THAT’S a growth!”

 How can you not think about a tumor that is growing inside you when you’ve been diagnosed with cancer?

My mother faced this problem. Her tumor interfered with her ability to swallow food and even to breathe comfortably. For her, that tumor was a huge problem. Would it grow larger? Would it take over?

It’s hard to tell yourself not to think about it, isn’t it? After all, you know it’s there. The scans confirm it. You’ve probably been tested for it. How do you cope with the reality that there is a growth inside you?

Sometimes the best way to cope with a situation is to meet it head-on. Information can be a lifesaver. When my mother found out she had this tumor, she also found out what treatment could do to it. Radiation made a difference. Chemotherapy made a difference. We made a point of asking a lot of questions. We wanted to know what her best options were. Slowly, but surely, she began to feel better as her cancer treatment kicked in. When she started, she needed oxygen round the clock, to help her breathe. But as the tumor began to shrink, she could leave that tank behind. She was able to resume a more normal life and do many of the things she loved to do.

It’s hard to cope with your fear about a tumor. Some people may tell you to put it aside, not think about it, or even let it go. But sometimes confronting that fear can be helpful. When you understand what the goals of your cancer treatment are, when you communicate effectively with your oncology team, you have a better understanding of how that tumor will affect your life. Much of the time, there will still be unknown factors. Will you have weeks, months, or years? Can the tumor be kept in check? And if it does grow, how will the oncology team continue to help you?

Every day, there are new ways of attacking cancer. Over the years, I’ve met people who have survived for decades with different forms of the disease. I’ve even met several Stage 4 patients, alive and kicking, despite receiving a terminal diagnosis years earlier. The truth is everyone is different. The more you understand about your own situation, the better. Sometimes the hardest thing about having a tumor isn’t the tumor, but the fear of the tumor and what it means for your life.

As for that tree, I’ve watched it for several years now. It continues to survive, despite that enormous growth. I am always amazed that it is still there when I come upon it during a hike. I expect it to die, but it doesn’t. In the spring, the leaves still come out. In the summer, I am still shaded by its canopy. In the fall, it still sheds its leaves like all of the other trees in the forest. Somehow, it goes on. Maybe you will, too. Be hopeful. Fight hard. Embrace life. With cancer, it’s important to see the forest AND the trees.

We don’t always think of cancer as being a teacher, but it taught me some important lessons. One of the biggest was that it’s important to “enjoy the party”.

For many years, I spent a lot of time in the kitchen at the holidays. Coming from a family of non-cooks, I was the one in the kitchen with my mother, fixing the feast for the holidays. Even my mother wasn’t a big fan of cooking, although she was good at it. Usually, she would bake her pies the day before, and then get up early in the morning, to start the turkey. I often filled in with the rest of the dishes, with relatives contributing their specialities.

Over the years,  I cared for her when her health began to fail. She still wanted to participate in the cooking process, but her energy was limited. That’s when I became her sous chef, chopping and slicing, so that she could do the actual cooking. It was important for her to feel that she was making a meaningful contribution to the gatherings.

But when she was diagnosed with lung cancer, everything changed. She was too fatigued from chemotherapy to stand in the kitchen, cooking for hours. Neuropathy robbed her of the use of her hands and feet. It’s hard to cook when your fingers can’t even do simple things, like button your own shirt or tie your own shoes.

And yet, my mother was still determined that we would entertain the family. There was nothing she loved more than a big gathering with lots of laughter. I learned to get the meal together in stages, so that most of it could be re-heated when the guests arrived.

As time went on, I continued to sharpen my organizational skills, trying to find ways to make my life easier. After all, my mother was still going for treatments and medical appointments, and that meant we spent a lot of time at the hospital and in doctors’ offices. I didn’t have a lot of time to fuss with food.

But more than that, I learned over time that it wasn’t so much the food that made the party. It was the people. Without family and friends gathering to share, a meal is just a meal. With the people you love all around you, there is laughter and love.

This year, Thanksgiving is going to be less complicated. I’ve got my pie crusts thawing in the refrigerator, ready to become apple pie when I chop my apples tomorrow. I made them in the Cuisinart earlier this week, with Julia Child’s food processor recipe. My corn muffins are in the freezer, baked fresh last week. I made a double batch of cheese sauce, used half for tomorrow’s cheddar broccoli and the other half for tonight’s macaroni and cheese. I cooked the turkey today, so it can be sliced up, piled on the big casserole dish of stuffing I will make tonight, and moistened with the canned gravy I bought to save myself some time. Tomorrow, I will try my first pumpkin souffle, as a side dish. One of the guests is bringing a wonderful cranberry-walnut tossed salad with gorgonzola. I’ll slice some cheddar cheese and make a platter with whole wheat crackers and red seedless grapes. If I have the time, I might even make a dip to serve with carrot and celery sticks. But one thing I’m not going to do is stay in the kitchen tomorrow.

Cancer is a big disease and the lessons it teaches us are big, as well. Tomorrow, I will join the party. I will listen to the stories, share the laughs, and be a part of the moment. I will appreciate the opportunity because time is promised to no one, and I know now that I should not wait until the next party to get out of the kitchen. We have to seize the day and embrace it. In the end, it’s not the little things that really matter. It’s the life you have. Make the most of it. Enjoy the party.

You’re probably wondering how in the world I can compare cancer to an autumn hike.
I’m not talking about the early autumn days, when the leaves are still on the trees and everything is painted in glorious color. I’m talking about the later days, when the leaves have fallen upon the trail, and when you look around you, the trees are bare.
This is the time of the year when footing is precarious. You never know what lies beneath the leaves, but every step of the way brings the crunching sound of your boots on the ground. Sometimes you slip, lose your balance, and start to slide.

It’s the time of year when the trail disappears under the vast sameness of the ground cover, and you have to rely on your keen eye to find the subtle dips and rises of the ground to guide you.

I go hiking with my little Yorkie friend. Any other time of the year, she is scampering through the woods, bold and curious. She climbs boulders and hops right over big logs across the trail. She feels confident in the woods, exploring every nook and cranny and hole. But in the fall, she has trouble moving through all those dead leaves. Even she doesn’t know what lies under them, and sometimes she falls over tree limbs and rocks. She becomes timid. The crackle of the leaves must be deafening to her.

With cancer, you never really know what lies beneath the surface. You hope for the best, but sometimes you can stumble over the unseen obstacles. It’s hard to know what to do and where to go, because when you look out on the horizon, all you can think about is that cancer. You sometimes wait for it to crop up unexpectedly. And it’s so hard to think straight, until you know that it is in remission.

And that’s why cancer is like an autumn hike. You go slowly. You study the terrain. You look for the clues to point you in the right direction. You try to find your way using all of your senses.

But there are also trade-offs to being on the trail in the fall. This is the time of year there is more sky above you. You can see further, because the trees are bare, so you get a broader view. In the vast sameness of the woods, where all you see are dead leaves on the ground and bare trees, you can also begin to see other things when you look. The treasures of the forest begin to reveal themselves to you. There might be a small grove of new pines emerging, or an unusual mushroom with a crooked cap on its head. You might discover, as I did today, the remnants of an old stone wall, from a couple hundred years ago, half-buried on the wooded hillside. It could even be something as simple as an aerial dance performed by winged insects, caught in a sunbeam. These things only appear when you look for them. Sometimes you have to force yourself to find the beauty in the never-ending brown landscape of fallen leaves.

To a hiker, the forest is never the same experience twice. Every hike looks and feels different. Things change, sometimes evolving over time. But you come to rely on your senses to help you navigate the unseen and unexpected. You train yourself to look for the pleasant surprises along the way. Let cancer be more than just a disease that affects your life. Let it be an opportunity of which you take charge. You may not be able to change the season of your life, but you can choose what you discover within it. Find the treasures that life offers along the way. Appreciate the goodness you stumble upon. Celebrate the love that shows itself. These are the things that really matter most.

I was having a conversation recently with a couple of baby-boomers who had been walloped by the economic crisis that is squeezing the middle class. After a sustained unemployment situation challenged their savings, they were starting to get back on their financial feet, but it will be a long struggle for them to regain economic stability. With new income going out to pay financial obligations as soon as it arrives, it’s hard to feel like there is much reason to carry on. Add to this some other stressful changes in their lives, with the death of a loved one and an empty nest as their child entered college, and they are right smack dab in the middle of a psychological obstacle course.

How does this apply to cancer treatment? The subject arose as to what they would do if either developed a serious illness. The feeling was that they wouldn’t bother to take extreme measures to treat the illness, because who wants to live a long life if it means suffering?

In reality, this couple is suffering from what amounts to battle fatigue. People who face prolonged struggles often come to have this kind of mindset. When it occurs during treatment for a manageable disease, it can imperil the outcome.

Sometimes patients who have been treated for cancer more than once come to feel that it’s not worth the effort. Or that they are burdening their families by seeking treatment for a recurring disease. When this kind of situation arises, it’s important that caregivers appreciate what is really happening and why.

If your loved one seems reluctant to seek treatment, perhaps the biggest problem isn’t the cancer itself, but the battle fatigue that accompanies it. What are the chances that your loved one can get past the obstacles and go on to live comfortably with the disease under control for several more years? Is there a reasonable expectation that the cancer can be brought into remission with treatment?

Sometimes the hardest job for a caregiver is to understand the real prognosis for the disease. When people talk about quality-of-life care, some will avoid it until the last minute, because they hope desperately for a cure. They’re willing to fight the fight and take on all the discomfort that goes with that. Some of these people would benefit from understanding the reality of their prognosis, that end-of-life care can be a better option. Sometimes people need to live their lives more than they need to pursue the potential brass ring. But other people sometimes opt for surrender long before that may actually be the best option. If a disease is manageable and the quality of life can be good with treatment, people need to understand that a negative mental attitude can prevent them from pursuing viable opportunities. If there is battle fatigue, patients often won’t see the potential for a future. If they are scared from their emotional and physical battles, they will think it isn’t worth fighting anymore.

Cancer treatment is always more than just surgery, radiation, and chemotherapy. It’s about helping the patient and the family understand that there are so many details in treating the disease.

Every combat veteran on the battle field dreams of the day he or she can go home again, to live in peace and leave the war behind. Your loved one is really no different. Cancer is an enemy that wages war with a ferocity that can intimidate. Help your loved one to recognize the realistic opportunity to survive. Keep the home fires burning. Work on the morale of your loved one. That what real support is all about.