Category Archives: 2018 A to Z Challenge


Progressive Muscle Relaxation

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is R is Relax : Progressive Muscle Relaxation

There’s a cycle you go through when you are under stress. Your muscles tense up, you get knots in your shoulders and a sore neck. Often these tight muscles cause you to get a tension headache. This only adds to your stress. By learning to relax your muscles, you can break the cycle, relieving tension and reducing stress. Progressive muscle relaxation takes a little bit of practice, but it is well worth the effort. It’s an extremely useful part of your relaxation routine. And it’s completely free.

Atmosphere helps Progressive Muscle Relaxation

Especially in the beginning, it is best to practice progressive muscle relaxation in a quiet, place of solitude. Make sure the temperature of the room you’re in is comfortable. Soothing instrumental music at a low volume as well as some candles can be very relaxing. Lie down on a comfortable surface such as a mattress or floor mat, or sit in a comfortable chair if lying down is impractical. Ensure that you won’t be interrupted. You could easily fall asleep by the time you’re done, so if you have someplace you need to be, set an alarm.

Get Comfortable

In the beginning, you will need to be prompted as to what you should do next. If you are comfortable, you can have a friend or spouse read the prompts. Or, you can record yourself reading them. Similar routines can be purchased or found online. It will only take doing the progressive muscle relaxation routine a couple of times.

Progressive muscle relaxation focuses on one group of muscles at a time. You will tighten each muscle and hold it for about 20 seconds before slowly releasing it. Concentrate on the releasing the tension slowly. As you do, focus on the sensation of relaxation. You will begin with your facial muscles, and then work down the body, one muscle group at a time until you reach your toes.

The entire routine should take about 15 minutes. Practice it once to two times a day. Once you have completed the routine, you can either go about the rest of your day, refreshed and renewed, or you can take a nap. It’s a great way to relax before falling asleep at night.

Progressive muscle relaxation

Progressive muscle relaxation script.

If you are recording this or having someone read it to you, it should be done in a soothing voice. Allow about 20 seconds to pass after the instruction to “hold,” before moving on to the instruction to “relax.”

  1. Start by relaxing your face. Let the stress of the day melt like wax until it each part of your face is completely free of tension. Begin with your forehead Wrinkle your forehead and then raise your eyebrows. Hold; then relax.
  2. Now Close your eyes tightly. Hold; then relax.
  3. Wrinkle your nose and flare your nostrils. Hold; then relax.
  4. Push your tongue firmly against the roof of your mouth. Hold; then relax.
  5. Scrunch your face. Grimace. Hold; then relax.
  6. Clench your jaws. Hold; then relax.
  7. Now move down to the neck. Tense it by pulling your chin down to your chest. Hold; then relax.
  8. Squeeze your shoulders up to your earlobes. Hold; then relax
  9. Tense your biceps. Hold; then relax.
  10. Tense your forearms and clench your fists. Hold; then relax.
  11. Arch your back. Hold; then relax.
  12. Expand your chest. Breathe in as deeply as you can. Hold; release the breathe slowly and then relax.
  13. Tense your abdominal muscles. Hold; then relax.
  14. Next, tense your buttocks and thigh muscles. Hold; then relax.
  15. Tense your calves pointing your toes. Hold; then relax.
  16. Flex and pull your toes up as if trying to make them touch your knees. Hold; then relax.
  17. Now mentally scan your entire body for any area that doesn’t feel completely relaxed. Without moving or tightening any muscles, imagine the tension being released even further.

Benefits for Caregivers

By relaxing in this way, you can reduce stress, tension, and even pain. This is important as a caregiver because those things often affect our ability to function. The great thing about this is that once you learn this routine, you can use it anytime and anyplace (within reason). You can even do this in your car on a lunch break. Lean the car seat back and in 15 minutes, you are refreshed and ready to go again.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-04-20 07:00:47.


Quality of Life

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is Q for Quality of Life

People often talk about quality of life when it comes to health concerns. Decisions about treatment must take quality of life into account. Patients often decide to discontinue cancer treatment based on concerns about quality of life. What is quality of life? Is there a set standard for it? In today’s A to Z post, I propose that each person has their own standard–and often their perception of what constitutes quality of life will change.

Quality of Life in an Iron Lung

In 2007, I say a news report about the company that made the replacement parts for the iron lung. They were no longer going to make the parts. The newsman interviewed Dianne Odell, a woman who had spent 60 years of her life in the 7-foot long tube that kept her breathing. She had lived a full, and (to her) a wonderful life, despite being confined to the iron lung.

She died a year later after a power outage. People around the world mourned. I did, too. Even now, all these years later, I have tears in my eyes as I write this. Her life made an impact. I would recommend looking her story up on the internet.

Often when someone is enduring something that is way out of our comfort zone, we say, “I could never handle that.” The truth is that you don’t know what you can handle until you have to. Life in an iron lung is something that I could never have imagined. So I was stunned when I learned that many people lived fulfilling lives in an iron lung.

“It feels wonderful, actually, if you’re not breathing well. When I was first put into it, it was such a relief. It makes all the difference when you’re not breathing,” says Martha Ann Lillard, another woman who lived most of her life in an iron lung. (1)

Quality of Life
By Photo Credit: Content Providers(s): CDC , via Wikimedia Commons

Quality of Life with Cancer

Our lives changed dramatically when my husband, Dan found out he had cancer.  Since then, Dan has gone through dramatic changes in his health many times. With every new treatment came new side effects. They were extremely hard to cope with. Beyond the short-term side effects, Dan also experienced long-term changes to the quality of his life.

Yet, through all of this, we continue to live life as fully as possible. It is more precious to us than ever. I asked Dan about his thoughts on this.

“I’m satisfied with less. My quality of life has maybe diminished, but I still have a purpose. It’s harder to do the things I want to do because of pain and nausea. I’ve lowered my expectations and made peace with the lower quality of life.” -Dan Erickson

We’ve experienced this dichotomy of holding so tightly to a life filled with pain and illness. We have made changes in our lives to accommodate the new normal.  For example, we maintain a fairly loose schedule in case Dan doesn’t feel up to doing something as planned. Our activities are usually pretty low-key. Thankfully, we’re both content with that. Perhaps the key to seeing the quality of your life lies in contentment.

I would love to hear your thoughts on this!

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Footnote:

  1. Daily Mail UK ‘It feels wonderful, actually’: The polio survivor who has lived inside an iron lung for 60 YEARS. By Daily Mail Reporter |

Originally posted 2018-04-19 07:00:34.


Plan B

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is P for Plan B – A Change in Plans.

Vows

My husband, Dan and I were recently talking about the fact that most people don’t really believe their wedding vows. They are standing before the minister (or whoever they choose to officiate their wedding). There beside them is the person they love most in the world. Their friends and family may even be watching this moment. The bride and groom often have overcome a few hurdles to get to this point. From this time on, they will be moving forward and upward. At least, that’s what they think! They vow to have and to hold, for better or for worse, for richer or poorer, in sickness and in health, until death when they part. What they are really saying is “For better, for richer, in health, we will live.” Anything else is plan B.

Not what we planned

When I married my husband in 2009, we had all of the hopes and dreams that any newlywed couple has. It was the second marriage for both of us. We each had three children. His were grown and mine were still very young. The girls instantly thought of him as their dad, and he adopted them in January of 2012.

When you have all of your hopes and dreams suddenly ripped from your hands, it can be shocking. It’s easy to see why one of the first things people in this situation feel is denial. I remember thinking that there was no way Dan could have cancer. We’d already been through a lot prior to meeting each other, falling in love, and getting married. He had just adopted my daughters a year earlier. We made short-term mission trips a regular part of our lives. He was pastoring a church. God wouldn’t let this happen to us, right?

Then, test results start coming back.

Facing Plan B

Once you get beyond the shock and denial, you can begin to figure out what life is going to look like with cancer in the picture. This is plan B. It’s the best you can do with the worst situation. You take all of your assets, your support system, your medical team, finances, time, your skills, and your drive and arrange them like pieces on a chess board. You defend your king and try to think three moves ahead whenever possible.

Plan B requires flexibility

You always have to be willing to change your plans. Appointments can change with little or no notice. The way a cancer patient feels can change like the weather, only it’s less predictable. People you are counting on might have to back out at the last minute. When these changes happen you need to be ready to change, too. It requires emotional and mental flexibility as much as the ability to make these changes. You have to take it all in stride. Try not to get too discouraged. It’s bound to hit you, but don’t let it keep you down very long.

It isn’t the “booby prize

Recently my husband had to change treatments. He went from a very easy treatment with very few side effects to old-fashioned, hardcore chemo. As he was reading about this on some cancer forums, he came across an entry that said, “Don’t think of chemo as the booby prize. It works.” Right now, chemo is our plan B. Whether your plan B is life with cancer or a lousy treatment option, it isn’t the booby prize. It just might be what you need to get to the next, best thing.

Martin Luther King Jr.

“If a man is called to be a street sweeper, he should sweep streets even as a Michelangelo painted, or Beethoven composed music or Shakespeare wrote poetry. He should sweep streets so well that all the hosts of heaven and earth will pause to say, ‘Here lived a great street sweeper who did his job well.”

Someone played a recording of this speech by Dr. King, at a monthly caregiver group I attend. The man who played it told us to replace the word “street sweeper” with the word “caregiver.” Even the most difficult jobs can be done in such a glorious way. That doesn’t mean you have to be perfect. You just need to be dedicated.

Your Plan B Assignment.

Life with cancer is never the life you plan. The truth is, we can’t really count on life turning out as we plan. At some point, we end up facing plan B. When that happens, finding a way to accept plan B, and even see some of the blessings of it can bring you a lot of peace.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-04-18 07:00:33.


Snake Oil Salesman

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is O is for Oil as in Snake Oil Salesman. One thing that can be very frustrating for patients and caregivers to deal with is the snake oil salesman.

I should specify that I’m not talking about oils specifically, nor am I disparaging the use of oils such as aromatherapy oils, cannabis oil, or any other oils that can be used to complement your treatment plan.  Snake oil is a generic term that I’m using to describe anything that purports to be the “cure” for cancer, with no scientific proof to back it up. This might come in the form of capsules, oils, specific foods, diet plans and places where miracles take place. I have a problem with the pitch, as much as the product.

Try this snake oil

I can’t count the times that people have offered us some cure that will work for all ailments. This isn’t usually an issue when Dan is doing well and the treatment he’s on is working. The second we tell people that his treatment has stopped being effective, the snake oil salesmen bring out their wares. We get emails, instant messages, and visits. It’s overwhelming and potentially dangerous.

Dangerous? But it’s Natural!

Most of these “cures” are innocuous. They won’t hurt anything but your pocketbook. You should always run any supplement past your oncologist because there are some which are dangerous. One example is turmeric. I love turmeric. I use it to decrease inflammation as part of my treatment for rheumatoid arthritis. My doctor has put her stamp of approval on me using this supplement.

We spoke to Dan’s oncologist thinking that turmeric might help reduce his pain levels more naturally. That got a big veto for 2 reasons:

  • Dan is a hemophiliac.
  • He is on chemo which lowers his platelets.

Turmeric thins the blood, something that when combined with his condition and treatment could be very dangerous. That’s just one example of why it’s important to always check with your doctor about any supplements you are considering taking.

snake oil

It’s Not All Snake Oil

The medical community is embracing many remedies that were once on the fringe of medicine. The use of these complementary treatments in palliative care is one of the reasons the oncology field is on the forefront of this movement.

Some examples:

  • Aromatherapy oils can be very helpful in easing side effects such as nausea and even fatigue.
  • Cannabis-based medications (And cannabis, itself, in some states) is used to improve appetite in patients who are losing too much weight.
  • Acupuncture is also being used successfully to combat pain, insomnia and other symptoms and side effects.

Supplement—Not Replacement

While these complimentary treatments are a wonderful addition to a patient’s treatment regimen, they are not a replacement. One of the problems associated with “snake oil” is the idea that it’s all or nothing. This is a scary thing when someone encourages a friend to skip the cancer center in favor of a “Tijuana Clinic.”

Faith Alone

PraySometimes, people encourage patients to use faith as a replacement for traditional medicine.

“God will heal you, but only if you have enough faith to trust in Him and Him alone.”

This is a really dangerous path to go down. It‘s one thing if a patient feels strongly that this is what they need to do. It’s something else to advise someone to do this. Consider that if you are wrong, it will cost your friend their life. Those kinds of decisions need to be made by the patient through prayer and contemplation.

Under Pressure

Patients and their families are already under intense pressure. Often they are bombarded with these snake oil pitches at the time they are most vulnerable. The influx of advice usually comes in when they are newly diagnosed or have a recurrence of their cancer. This is no time to take advantage of their fragile state and add to the feelings of confusion and doubt. Sometimes the intentions behind the advice are pure. Many times the person promoting the snake oil will benefit financially. It can become difficult to weed one out from the other. A patient and his or her loved ones shouldn’t have to.

Educating the Public

Somehow we are expected to educate everyone who comes along and says, “I really don’t know anything about this but…” Only seriously ill people(and their loved ones) get that sort of cavalier advice. One may as well shove their hand into a bin full of assorted pills and say, “here,” handing the patient a fistful, “I don’t know what these do, but you can look into it.” It’s the same attitude.

Anxiety for Caregivers

Snake oil solutions can cause a lot of anxiety of caregivers. Every time some new miracle cure is pedaled to my husband I worry whether or not he will succumb to the temptation to chuck the treatment he’s on and take the next flight to Mexico. We have vigilantly vetted everything he has done to combat his cancer. I think that’s helped him live as long as he has. No one has as big a stake in his survival as I do. We were supposed to grow old together.

The Right Way to Do It

I will never forget the time we got a phone call from a dear friend. He wanted to meet up with my husband to “give him something.” This instantly set off the bells and whistles that he was going to try to sell him on a “cure.” Instead, he prayed with my husband and gave him a mouthwash. He had read on Dan’s Caring Bridge that he was struggling with some terrible mouth sores. Nothing seemed to work. It was painful to eat, drink, and even talk. This friend not only recommended something, he gave him a bottle. Boy, did it work! It cut the healing time in half and immediately brought pain relief to Dan’s mouth. I think of this wonderful friend whenever Dan gets a mouth sore and runs to the bathroom to use the Astring-O-Sol on it. And I thank God for that friend and pray a blessing on him.

Pray

My solution has always been to pray for wisdom. This is how I sort through the advice. I recommend it.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

 

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-04-17 07:00:59.


saying No

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is N for No: The Power of Saying No.

When you’re a caregiver, saying, no can be the difference between drowning in obligations and keeping your head above water. Even though it’s important, saying no might be a very difficult thing to do.

Saying No to Others

Saying no can often feel like you are disappointing someone. It’s especially difficult when you’ve been involved in the leadership of a group, or have been a committed member for a long time. It can be hard to find someone who’s willing to step up to the plate and take on your responsibility. And, it’s always a good cause, whether it’s being on the church bake sale committee or your son’s Cub Scout den leader. People will understand, though. And sometimes, other people need a chance to step into these roles. You taking a break might be just the opportunity they need to get out of their comfort zone and contribute.

The People You Love

Saying no to the people close to you can be even more difficult than taking a break from church and civic groups. Your best friend, who can’t find anyone else for to dog-sit for the weekend, might turn to you for help. How do you say, “no?”

“No. I wish I could help, but I can’t.”

And don’t add and apologetic, “sorry.” You have nothing to be sorry about. Once your friend remembers all that you are dealing with, she will completely understand.

Saying No to Your Kids

Most adults will be sensitive to why you are saying no. Kids aren’t always as understanding. They are giving up a lot during this time. Sit down as a family and decide what the priorities are. Look at your family calendar together (including medical appointments). Look at your resources. Ask your support system for help getting your kids to and from the activities that you decide to commit to. Using a tool such as CaringBridge’s Task Planner can be very helpful with this.

Saying No

Burnout Prevention

When you became a caregiver, you got a new full-time job. You can’t add that commitment of time and energy to your life without dropping some other obligations. This doesn’t mean that you quit everything, though. Find something that you really enjoy doing for yourself. It might be a weekly coffee date with your best friend or an occasional spa day to relax and rejuvenate. It should be something you look forward to; something that feeds you rather than drains you.

The power of No

It’s not terrible for people to ask you if you want to do “this” or participate in “that.” They don’t want to offend you by taking away your right to decide for yourself. In fact, saying no can be something that’s very therapeutic. You may not have control over a lot of things when you are dealing with cancer, but you can sure say no to heading up the church picnic planning committee. Saying no gives you some control over your calendar. So instead of feeling bad about it, feel powerful!

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-04-16 07:00:17.


Making Memories

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is M for Memories & Terminal Cancer.

When someone you love is terminally ill, making memories becomes a priority. Recording memories is important, too. Often caregivers hesitate to say that memories are the thing they want to make most. There is often concern that by talking this way, you will hurt the patient you are caring for. Maybe they will think that you’ve given up. The truth is, everyone is thinking about memories, but few people talk about it. That’s okay, to a point. When you know that time is limited, it’s important to help the patient reach their end of life goals.

Final Wishes

To prevent family discord, it’s essential that the patient, express their desires regarding everything from medical decisions to who they want at their bedside when the end comes.

They should have an Advanced Care Directive as well as a proxy (probably you, their caregiver) who can make medical decisions should the patient be unable to do so. Even with these valuable tools, it’s often difficult for family members to believe that the patient’s desires could be what they are. Hearing them from the patient’s own lips will go a long way toward helping other members of the family understand that you, the proxy, and medical team are honoring the patient’s wishes.

There is Always Hope—Hope Changes

People who are terminally ill often go from big hopes to being disappointed. They go from hoping for a cure to hoping for “quality of life.”

There’s a difference between curing and healing. We can be healed, even at the end of life. Healing is wholeness. It’s reconciliation between estranged family members. It’s forgiveness. There comes a time when we need to switch from treatment for curing to healing. Sometimes healing involves leaving lasting memories for posterity. Are there people you need to make peace with? Are there unspoken things you need to say? Include these on your list of goals.

Hospice

Hospice, as an approach, can enable a patient to look outside of the box and find other ways to reach these goals. Figure out a way to meet those goals despite death. For example, the patient can prepare cards for events such as their children’s birthdays, graduations, weddings, and other big events. You, as a caregiver can help the patient with this. How does he or she want to be remembered? How can you ensure they won’t be forgotten?

Live until you Die

Everyone has certain goals they’re holding on to. What are the goals of the loved one you are caring for? They may include a wedding he or she wants to attend, the birth of a grandchild, or a trip they want to take. These goals can strengthen their resolve to survive.

A lot of people avoid setting goals out of fear of failure. You can really set your heart and mind on achieving them when you say those goals aloud and write them down. Goals often change. Reassess them often and decide whether or not they are still a priority, or if they need to be adjusted, or let go of.

You and your loved one can hang on to hope that you’ll get to the wedding, or visit Italy. But, if you can’t, have a plan in place that will enable you to experience a taste of it. As a caregiver, you can work with your loved one’s care team and family members to help your loved one achieve as many of their goals as possible, making memories in the process.

Memories: Our Story

In the time we have had, Dan has spent time writing letters and making both video and audio recordings for his children and grandchildren. We have been intentional about making memories. We’ve had family pictures taken and even had casts of his hands made.

 “When you were born you were crying and everyone else was smiling. Live your life so at the end, you’re the one who is smiling and everyone else is crying.”

― Ralph Waldo Emerson

One thing that has helped Dan share his stories is The Memory Maker’s Journal. The questions in the journal will bring to mind memories of your family, your youth, your early adulthood, and the family you raised. This is perfect for recording the memories you would like to pass on to future generations. It also makes a great family activity. Ask loved ones these questions and record the stories of their life. Your experiences and your memories are yours alone until you share them with others. By making a record of them, you leave a part of your life to live, even beyond your years. The treasure that is locked inside of you is a gift you can give future generations.

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

 

Originally posted 2018-04-14 07:00:12.


Living with Cancer

I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is L is for Living with Cancer.

What does a day in the life of a cancer patient look like? I’m asked this question a lot by people who want a better idea of how to support a loved one who’s living with cancer. A couple of years ago, I brought it up at the dinner table to see what our family thought.

Our 16 year old immediately said, “It depends on which day.”

My 19 year old said, “Which treatment.”

“And what he did the day before,” added our 12-year-old.”

Then they proceeded to list off all of the scenarios that we might happen to experience at any given time. I was surprised at their insights at such a young age. Kids who have a parent living with cancer quickly gain a keen understanding of its effects.

The past 5+ years of living with cancer, are divided up by treatment and side effect; hope and heartbreak.

Year One- A Year of Adjustment

In the beginning, living with cancer was overwhelming. It wasn’t just the physical, but also emotional well being that was in jeopardy.

Near the end of 2012, Dan began the targeted therapy called, Tarceva. He had a mouth so full of sores that he could no longer preach his sermons, so, in early 2013, we closed the church. He was heartbroken. We learned at that time how inundated patients and their families are with insensitive people. So many people think they know more about the patient’s cancer than the patient and their medical team.

After a few years of reflection, I wrote a book called, “Facing Cancer as A Friend: How to Support Someone who has Cancer.” The truth is, most people want to help, but they don’t know how. So my hope was to give people the knowledge they needed to help in a sensitive caring way, without being intimidated by the enormity of this disease.

Year Two- Fatigue and Weakness

By early 2014, Dan was still on the wonder drug that shrank his cancer to near-invisibility on scans. He’d become so fatigued and out of breath, that a walk around the neighborhood was difficult. Nothing excited him anymore because thinking about doing anything was overwhelming.

That was when embraced “one thing a day.” Each day, Dan could do one thing; a visit with a friend, do a real estate showing, attend a prayer meeting, Sunday morning church, etc. He had to decide what that day would allow, based on how he felt as well as what else was scheduled that week.

For example, if it was a big thing like a trip to the Minnesota State Fair (a must-not-miss), we would map out our day, making one strategic pass through the fair. The last portion of walking was taken care of by the SkyGlider, a chair lift type of ride that runs along a suspended cable over the fairgrounds. Dan would make sure to have plenty of pain medication on hand and drink a lot of caffeine. Big days like that meant also doing nothing the day before so he could rest, or the day after, so he could recuperate.

Resistance

If you had a sizable army, and you were waging a battle against an island–even a very large island, given the right weapons, you should be able to defeat it. This is what often happens when fighting cancer. Unfortunately, there are times when you are on the island. You realized too late that a rogue army was taking over all of the surrounding islands. By now, no matter how well you fight, and how strong your army is, you will eventually be overcome. The enemy has the advantage.

Can’t you just drop an atomic bomb?

That’s what I wanted to do when Dan found out he had cancer. but, Dan had metastatic cancer that had run rampant throughout his body via his lymphatic system. Because his body is the soil that cancer lives on, dropping an atomic bomb (if there were one for his cancer) would have to completely decimate him to kill every bit of cancer down to the cellular level. We couldn’t cut it out or “blast” it out. So we are left with keeping it at bay until eventually cancer’s reinforcements come in and gain an advantage, again.

A New Drug

Eventually, the cancer in Dan’s body eventually became resistant to the Tarceva. The next drug he was on, Afatinib, was similar to Tarceva in the way it worked. The oncologist hoped that it would be different enough to get past the resistant cells. This drug messed with his digestive system, so he had to regulate that with more pills. Those problems only led to more painful issues that can accompany prolonged digestive problems.

His toenails were always inflamed, and soon his fingers were as well, making typing nearly impossible and always painful. Getting dressed was often accompanied by a pained, “Ow!” He had to soak his nails twice a day in Epsom salts. It was the only time I could see the virtue in him wearing flip-flops (even then, it was questionable).

Living With Cancer Means Waiting

Waiting for scan results often fills patients and their families with an anxiety termed in the cancer world, “scanxiety.” Would we be able to keep going like we were, or would life and treatment take another detour through some unknown territory in a dark forest filled with “lions, tigers, and bears—oh my?” For all the problems Afatinib caused him, it didn’t do its job. On my birthday that year (while out to dinner), we checked our e-mail and found out the cancer was worse than when he was diagnosed 2 years earlier.

 

Brain Mets

Not only was cancer back and worse than ever, but it had also metastasized to his brain. To treat it, Dan had to have something called, “Gamma Knife” surgery at the University of Minnesota. This was essentially 200 concentrated beams of radiation focused on the tumor. Thankfully, it worked. Once cancer hits the brain, you feel like you’ve entered a whole new part of the journey. You feel vulnerable, living with cancer in your brain.

Year Three- Hard Core Chemo

Next, they pulled out the big guns. Carbo/Taxol. Those treatment days were full days; We came to the cancer center in the morning and didn’t leave until the end of the day. He would sleep in the chair hooked up to the IV, and I would sit in a folding chair with my Kindle. At noon, I’d run to the Subway shop to bring back lunch.

After that, he spent at least 16 hours a day in bed. On bad days, he would only get up for meals, and even then, he had a hard time eating, so he didn’t stay up long.

Pain

Within a couple of days, he would be in so much pain. It was like torture; Stabbing, throbbing pain in his bones that no amount of pain medication could control. He turned to ibuprofen which is a big “no-no” while on chemo, since it’s a blood thinner. It helped, though.

Nausea

Nausea plagued him day and night, often leaving him with the feeling that the whole world was spinning. He lost his hair, including the mustache he had donned for over 30 years. We had a head shaving day when the missing clumps made him look patchy. I have always given him his haircuts. That one was a hard one to get through.

Chemo Brain

Dan got major “chemo-brain” (a term given to the mental fog that hinders cognitive thinking and memory). When it was at its worst, he once asked me the same question 3 times in five minutes. He not only forgot the answer but that he had already asked the question.

Immune System Down

The worst, though, was when his immunity would plunge and he would get a raging fever that was nearly impossible to bring down. We had plenty of time racked up in the emergency room during those months. He missed church most Sundays, which was hard on him. Living with cancer didn’t feel much like living at that point.

Small Reprieves

During that time, some amazing people came alongside us, blessing us with meals during the week of treatment, and helping to transport our daughter to and from school. The third week, the week before he would have another treatment was often fairly good. He could visit with people and spend less time in bed.

An Easier Treatment that Didn’t Work

It was time for an easier treatment. Alimta was an infusion that only had us at the cancer center for half of the day if we scheduled it right. There were very few side effects. We hoped he could stay on it for a good, long time, but that wasn’t to be. The Alimta didn’t work, and the cancer was coming back.

Immunotherapy

Next, we would try immunotherapy. It was (and is) all the rage in cancer circles. It would harness the power of his own immune system to fight cancer. The Opdivo infusions only took up half a day as well, and he tolerated them at first…

Then came a cough. He could hardly talk without having to suppress it (or at least try to). He was constantly using lozenges to ease his urge to cough.  A cough was a known, side effect of the drug, in as many as 30% of patients. Theoretically, it would go away, once he went off of the drug. But, the drug was so new, it was hard to know for sure.

His cough got worse, and Dan became more isolated, Now, he could attend church, but he couldn’t sing. Visiting with friends was difficult because every word he spoke seemed to instigate a cough.

Year Four- Life and Death and Life

For our anniversary in 2016, Dan took me to a bed and breakfast. It was in a tugboat in St. Paul on the Mississippi. He planned the most romantic weekend.

The day we returned home, he went to bed and didn’t get up for 3 days, except to eat. The cancer was back. It had been having a party in Dan’s lungs while he was on Opdivo.

The pulmonologist began to talk to us about preparing for the end. She was candid and caring. I was broken. I had been on Dan’s case since his diagnosis to get some things prepared. It was hard for him to do because he never felt very good, and when he did, he wanted to live—not think about dying.

But he was… Right before my eyes, I was watching the love of my life slip away.

Speaker

Our Kids Coping With their Dad at his Sickest

Children often suffer in the shadows of a parent living with cancer. They feel powerless to do anything about it, and the adults in their lives often don’t know how to help them. Our youngest began to fall into the abyss of depression. She is on the autism spectrum and struggles with her emotions, anyway. This was too much. I took a break from anything that wasn’t essential. I needed to cherish every moment that I had left with Dan, and I couldn’t leave our daughter alone.

A social worker visited to see how the kids were coping, and what she could do to help. She gave them coloring books to express their emotions. It sounds like a simple thing, but it meant a lot to them.

Living with Cancer
Lung function tests

Home Health Care

We had home health care at that point. A nurse would visit each week, sometimes twice a week, to check his vitals. She talked to us about transitioning to hospice. The only hope we had of ending Dan’s cough was to get the cancer under control once again.

Iressa

We decided to try a new drug on the market.vIt was similar to the Tarceva that had helped him so much, in the beginning. Iressa helped him to breathe again for 2 weeks. During that time, they ran a new, genome test. The cancer in Dan’s body originally had a mutation called EGFR. Those cells, being smart, eventually turned themselves into a new mutation, known as T790M. A drug, fresh on the market called Tagrisso could treat both EGFR and T790M mutations. Tagrisso had just been fast-tracked and put on the market 3 months early–just in time to save Dan’s life. There was hope!

Gemzar/Cisplatin

It could take a couple of weeks for the Tagrisso to work, and Dan’s oncologist worried that he didn’t have enough time. He started receiving an infusion of a very old, harsh, (but effective) mix of Cisplatin and Gemzar chemo-once a week for 2 weeks, and then a week off. Dan’s immunity plummeted to a dangerously low level and after the 2nd treatment, they stopped.

Tagrisso

It was time to rely on the Tagrisso, alone. Soon, he was breathing again. His scans were looking remarkably better. In the beginning, he had lingering pneumonia which he caught when his immunities were so low. But, soon he was better and we were able to fly to California where we spent time with our daughter, son-in-law, and our beautiful twin grandsons.

We began taking walks again. We made lots more memories as a family. Dan started getting things in order for me in case things changed. Our experience has shown us that they do.

One day, we were having our morning coffee on the deck and he remarked that he has never been as aware of the amazing beauty of the world as he is now. I asked him why he thought that was. After thinking for a minute, he said,

“I think it’s from having a near death experience. Before, I had cancer, but my problems were the side effects of the drugs. It was more theoretical. But, not being able to breathe because of the cancer—that did something.”

Year Five- The Easiest Year

Last year, living with cancer was pretty much auto-pilot. Dan continued to have monthly appointments with his oncologist, monthly labs, and scans every three months. Aside from that, we tried to put the reality of living with cancer on the back burner as often as we could, Dan still suffered fatigue, pain, and weakness. He takes pain medication 24/7 to try to keep it under control.

To see a video of us talking about our experience with Tagrisso, check out my (future) post about making a video.

A Disturbing Scan

After five years living with cancer, using the best drugs available, things have again changed. Eventually, even the best drug stops working. Dan has had 3 rounds of Gemzar and Cisplatin. We recently got new scan results, ones we’ve been dreading. There has been some improvement, and just as much progression in his lungs as well, as a new metastasis on his T11 vertebra. This will mean more change. Our oncologist has nothing more to pull out of her bag of tricks, so she is sending us to the Mayo Clinic, in the hope that they might have an experimental treatment option.

So, what is a day like, living with cancer? Dan says, ”No matter how the day goes, one thing is consistent. It isn’t how it was before.”

Resources

I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

The Erickson Family, Photo by Everbranch Photography

 

 

 

Originally posted 2018-04-13 07:00:55.

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