Category: caregivers

Sep 06

Come sit in the E.R. with me

 

 

 

 

 

 

These halls are quiet on a Sunday morning with only the sound of monitors to echo in the silence of large emergency room.

Not this again. I am tired of this place.

It’s been a while since I’ve stood here, and yet it comes right back as if it were but a minute past. The too quiet of suppressed discomfort and fear, the too still of exhaustion, all mixed into the smell of sterility and latex.

“Are they going to do anything that hurts me, Mom?”

“No, son.” I hope not, son.

Chase is seven now. He’s five whole years past the first minute we heard the awful words “There’s a large mass”. He’s five whole years into his aggressive, malignant brain and spine tumors and his eye problems and his heart and hearing issues, and every other issue that seems to walk hand-in-hand with that cancer word.

Every time he is wheeled into the MRI, the news comes that his status remains “No Evidence of Disease”, but the magnetic resonance can’t quite pick up on the evidence of pain, suffering, brokenness, and exhaustion.

This Sunday morning, the rest of the family is at church and Chase and I, we sit in the darkened ER room not because he’s had a seizure, or a relapse, or even a headache. Oh no, we sit in this space because his face is swelling and it needs to be stopped. The doctor explains in matter-of-fact tones that the airways are crucial and swelling is sometimes bad for breathing.

And my balding boy’s face swells and grows some more against cheeks tinged pink with fevers because when you’ve had ten different chemotherapies and radiation and everything but the kitchen sink thrown at your body when you could barely walk, well, sometimes your immune system decides to go A.W.O.L. over a cavity. One little cavity that goes rogue and becomes an abscess and then suddenly we are sitting in the ER on a Sunday morning instead of going to church. Again.

I want to fight it. I don’t want this to be how the day goes.

And yet, isn’t this the way of it all too often when it comes to life and cancer? The big things are sometimes the easiest to accept because they just straight-up rob you of breath and heart beats and feel so inevitable in their “bigness”. It’s the little things like the port that occludes, the eyelashes that fall out, the random side effect or the ninety-seventh time to the ER that just wastes away at my patience and my faith. The little foxes in the vineyard of the faith marriage between my Savior and me [Song of Solomon 2:15] are beeping monitors, sticky IV needles, and the nurses who say “Okay, we just have one more set of questions for you here.” Make it stop, please Lord.

So many times I have prayed to be delivered from the awful repeat of the hospital day. So many times the answer is no. And quite a handful of times the answer is no and there’s more.

So many wild cards…

And yet, here’s the thing and don’t miss it…

Jesus is in charge of the wild cards. In truth, the wild is not wild to him. “To [God] the night shines bright as day. Darkness and light are the same to you.” It only looks upside-down and inside-out to us.

So where do you go when it’s the ninety-seventh hit in a row on your patience and faith is feeling really thin and worn?

I’m so glad you asked. Come sit in the ER with me – in these uncomfortable chairs – and we will review what we know to be true. Because I need to hear it again…and maybe you do too?

God is good even when He doesn’t do what we ask: “Three different times I begged the Lord to take it away. Each time he said ‘My grace is all you need. My power works best in weakness’.” [2 Corinthians 12:8-9a]

God sees things we cannot see: “Now we see things imperfectly like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely just as God now knows me completely.” [1 Corinthians 13:12]

God is for us: “The Lord himself will fight for you. Just stay calm.” [Exodus 14:14]

And here’s why I lay these verses down again and again even though they hold no help for radiation-rotten teeth, and no cure for a 7-year-old desperately broken by a tragic disease. Here’s why: because I may never get the answers I want on this side of heaven. I may never see the healing I desire, the miracles I crave, and the next time I pray not to go to the ER, there’s a very real chance that I could end up with Chase admitted instead – because this is the way of the cancer world: two steps back for every one slow shuffle forward.

But this: God’s words are sharper than the sharpest scalpel and cleave through everything that holds us back from his love. And God’s promises are more tried and true than the best treatments the cutting edge of research has to offer. And sometime, someday, though the hair might fall, and the skin color fade, this word of the Lord is forever and ever, AMEN.

In Christ alone, our hope is found.

So wherever you are this week, whatever you’ve asked to be released from, whatever you just can’t possibly do one more time, actually, YOU CAN.

“For when I am weak, then I am strong”…IN CHRIST. [2 Corinthians 12:10]

Thank you so much for stepping into the ER room with me. Until we step into the throne room of our precious Jesus, and I get to meet you, we will take this life as it comes in grace… moment by moment.

 

TODAY’S GUEST BLOGGER is Ellie Poole Ewoldt, a wife, mother, daughter, sister, and friend. Her days are spent in the craziness of caring for four little kids, one of whom is a cancer survivor.  www.chaseawaycancer.com

 

 

 

 

 

Jun 07

Yes, there IS life after cancer!

 

 

 

 

This past Sunday was National Cancer Survivor’s Day— a holiday to celebrate survivors and remind them and their caregivers that there really is life after a cancer diagnosis.

So when do you know that you or your loved one is a cancer survivor? When the scan comes back clear? When the tumor marker is normal? When the treatment is finished? When there’s no evidence of any cancer?

I was diagnosed June 26, 1990, with Stage 3 colon cancer. I still am cancer-free and count myself as a very blessed survivor. But even if the cancer had returned, I would still count myself as a survivor because I agree with the National Coalition for Cancer Survivorship when it labels cancer patients as survivors “from the moment of diagnosis and for the balance of life.”

I didn’t always think that way.

I used to think that you if you lived five years cancer-free after a diagnosis you were a cured cancer survivor.

I remember going in for my five-year oncology checkup in the summer of 1995 (before I started working in Marc’s office) and gleefully announcing to Marc that I wouldn’t be seeing him professionally anymore. (I’m not quite sure how I got that notion, but I hear many others say the same kind of thing. We’ve probably made that association because statisticians often give data on five-year survival rates for different types of cancer.)

“Where did you get that idea?” Marc responded.

It’s five years; I’m cured!” I told him; surprised that he didn’t realize it was such a momentous day.

“Well, the chance the cancer will return has diminished greatly, but you still need to be checked for the rest of your life,” Marc soberly explained.

Talk about bursting someone’s bubble!

I waited five years to be proclaimed a survivor and there was going to be no such official announcement.

Thankfully, a short time after that day I read the above-mentioned survivorship definition from the National Coalition for Cancer Survivorship and proclaimed myself a survivor.

So I hope you’re not waiting for some mythical five-year mark to earn the label of cancer survivor. Anyone who has survived even one minute since diagnosis already is a survivor! Believe it!

Before I retired in 2015, I loved watching and listening to those survivors in my support group who had medically incurable cancer, but still found much happiness. Because of their circumstances others might say these folks have the right to be fairly fearful. But these “incurable” survivors have come to realize—as have those of us who are cured—that we don’t need the right circumstances to be happy, but we do need to believe the right things about our circumstances to be happy.

It’s important what you believe about yourself and your loved ones. When I finished treatment for my cancer, the odds the cancer would come back were greater than the odds it wouldn’t. That doesn’t sound like a situation that would make a person very happy. But what I believed about my circumstances did give me joy.

I believed the truth that I was already a cancer survivor.

For as he thinks within himself, so he is. Proverbs 23:17

And I believed the truth that nothing, including cancer and its treatment, can diminish God’s great love for me.

And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today or our worries about tomorrow—not even the powers of hell can separate us from God’s love. Romans 8:38

I also believed the truth that God didn’t need good odds to heal me, that there are people everywhere surviving despite their odds.

For nothing is impossible with God. Luke 1:37

You and your loved ones have survived a cancer diagnosis. God obviously has plans for your life or you wouldn’t still be here. Ask Him to shine His light on your path and then don’t be afraid to follow where He leads.

Will you pray from Psalm 119 with me? Your word is a lamp for my feet and a light for my path. I’ve promised it once, and I’ll promise it again: I will obey your wonderful laws. I have suffered much, o LORD, restore my life again as you promised. Amen.

If the music video below doesn’t automatically load, please copy, paste and click on this link to enjoy  https://www.youtube.com/watch?v=ewD9aRxnzec )

 

Apr 26

How to Be Good to Yourself so You Can Be Better for Someone Else

 

So what’s the gauge reading on your emotional tank today? Getting low and searching for a fill-up? Half-empty and still draining? On fumes and slowly coasting downhill? I want to encourage caregivers today because the focus is so much on the patient that those standing by them often get forgotten. (If your’re not a caregiver right now, I hope you’ll read this anyway because you probably will be one some day and because it may help you understand how the “other” side feels!)

I first came across the idea of an “emotional tank” while raising our three daughters and reading How to Really Love Your Child by psychiatrist Dr. Ross Campbell. The book’s basic premise is that each child has a figurative emotional tank which gets filled by his or her parents as the child’s emotional needs are met. Only when that tank is full can children be expected to be at their best.

As we age we don’t outgrow our need to have our emotional tank filled. And just like kids, we only can be expected to be at our best when our tanks are full. All day long people and events make either withdrawals or deposits in our lives. Some of our tanks were so neglected when we were children that they leak easily, and we have trouble keeping them full as adults. Others of us have put lids on our tanks, hoping no one can ever make a large withdrawal again, but that also makes it difficult for anyone to make a deposit.

And then along comes cancer or a heart attack or dementia or some other diagnosis the life of someone you love. Forget about the lid. These life events can ram huge holes right in the side of your tank and quickly drain your emotional well-being, leaving you frantically searching for a refill.

And now, because you’re not a child, it’s your job to make sure your own tank gets filled.

 

I talked recently with my friend Cynthia about the crucial, but exhausting role of caregiver because 1.) she’s been one for more than a decade and 2.) she’s written a really helpful book on the subject.[1]

Cynthia says her role as caregiver to her husband, Jim, has endured much shifting throughout his thirteen-year journey with non-small cell lung cancer.

“The role of caregiver changes depending on what Jim’s doing and what’s happening with him,” she explains. “I’ve worn different hats at different times—I’ve been a cheerleader at times, and other times I’ve been called on to be a nurse.”

Because Cynthia has been a caregiver for so long—through seven lung cancer recurrences, one go-round with prostate cancer, multiple surgeries, and countless treatments—I asked her how she finds the physical and emotional energy she needs to care for Jim.

She recommends finding a support group, ideally one just for caregivers. “Then you can really express yourself instead of both trying to protect each other,” she says.

“That first year [after Jim’s diagnosis] I didn’t really do a good job of taking care of myself,” Cynthia admits.

But in the intervening years, she says she has tried to play tennis or do Pilates or yoga two or three times a week. “That really helps me with stress,” she explains.

Cynthia also joined a community singing group, which she says “always lifts my spirits.” Together she and Jim find stress relief by watching comedies and reading funny books on “hospital humor.”

For most of the past three decades I’ve been a caregiver for family members who were either physically or mentally unwell. I’ve had a relative with dementia living in our home for years, and I’ve made biweekly seven-hour car trips for months to be with a relative undergoing chemo. I’ve been so physically fatigued I had to literally crawl up the stairs, and I’ve been so emotionally spent I’ve spent hundreds of dollars to pour out my woes to a counselor.

Caregiving is incredibly hard. I get it.

But I also know we make the job even more difficult when we fail to take good care of ourselves. Do you know what Jesus said the two most important commandments are? First, “Love the Lord your God with all your heart, all your soul, and all your mind” and second, “Love your neighbor as yourself” (see Matthew 22:36-39).

Don’t miss those last two words: “as yourself.” The Bible doesn’t just say to “love your neighbor,” it says we need to love ourselves. In fact, we can’t really love other people if we don’t love ourselves.

It is not selfish of you to do something refreshing, rejuvenating, or relaxing for yourself. You cannot “fill up” your loved one when you both are running on fumes. Somebody is going to stall and get rear-ended.

But an emotional tank doesn’t come with a loud, flashing warning when it’s getting low. You have to pay attention and notice the telltale signs in your life. Then when emotional refilling is needed, you have three ways to be replenished.

Firstly, make your own deposits by finding ways to “be good to yourself.” Watch a funny movie, enjoy a massage, go fishing, get a pedicure, take a walk, hit a bucket of balls, or catch a nap. What rejuvenates me may not do the same for you, but you can figure out what makes you feel better for the long term. (Don’t settle for the temporary fixes of alcohol or drugs because they will quickly drain your peace as soon as they wear off.) If you can’t leave your family member alone, this is the time to call in one of those offers of help others have made. Do something to lift your spirits so afterward you can once again lift someone else’s.

Secondly, allow your friends and family to do things for you and with you that will enrich your emotional well-being. You cannot be expected to be at your best all by yourself. But people cannot read your mind, so clearly tell them a specific way to make a deposit in your tank. If you don’t think you have friends who can improve your life, then pray and ask God to send someone your way. The apostle Paul described how God once sent someone to encourage him at just the right time.

When we arrived in Macedonia, there was no rest for us. We faced conflict from every direction, with battles on the outside and fear on the inside. But God, who encourages those who are discouraged, encouraged us by the arrival of Titus. His presence was a joy. 2 Corinthians 7:5-7

And finally, spend time with God and ask Him to pour into you His supernatural hope, love, strength, and, yes, even peace in the face of caregiving.

The LORD gives his people strength. The LORD blesses them with peace. Psalm 29:11

Whom have I in heaven but you?
I desire you more than anything on earth.
My health may fail, and my spirit may grow weak,
but God remains the strength of my heart;
he is mine forever. Psalm 73:25-26

“I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.” Jesus speaking in John 14:27

When your emotional tank needs refilling, you can do it yourself, let others do it, or allow God to do it. But I truly believe you’ll be most fulfilled when you rely on all three. The most loving thing you may do for your loved one today is to be good to yourself.

 

[1]
Cynthia Zahm Siegfried, Cancer Journey: A Caregiver’s View from the Passenger Seat (CZS Books, 2010). For her online support group, f.a.i.t.H. (facing an illness through Him), go to http://faithsupportgroup.com/welcome.html.

(If the music video below doesn’t automatically load, please copy and past this link to enjoy https://www.youtube.com/watch?v=6pEG7reKSf0 )

https://www.youtube.com/watch?v=6pEG7reKSf0