The Journey of a Lifetime: A Caregiver’s Perspective

I am a caregiver to my best friend and husband, Darrell. We were high school sweethearts. When we were (it now seems) ridiculously young, we promised each other in a church wedding to care for each other in times of sickness and health.
      

In Sickness and in Health: Let’s Do This!

For many, many years, we kept that promise during healthy times. With Darrell’s glioblastoma (GBM) diagnosis, we faced having to make good on the other part of our promise: The part that required care in times of sickness.

Although Darrell’s diagnosis felt like (as it does for many GBM patients) a bolt out of the blue, there was no question in my mind, heart, or spirit that I was fully committed to caring for my partner. We took this photo the day before Darrell headed to the hospital, the day before we learned about the letters “GBM.”

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Erased!

The night I sat in the hospital with Darrell and his probable diagnosis of GBM, the looming diagnosis felt powerfully real. Not one single bit of denial seeped into my consciousness. I felt like I was incredulously asking, “This is really happening?” and simultaneously affirming to myself, “Holy Moly, this is really happening!”

To accept Darrell’s probable diagnosis, I erased so many mental images I had conjured of our future together. Every notion of the future we thought we had coming to us was just gone during those dark hours of the ICU.

One image of us I erased at diagnosis was of Darrell and me spoiling grandchildren together. Here we are at the park recently with granddaughter Nova.

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Do You Know how Bad this Could Be?

Darrell’s diagnosis certainly brought challenges for me as a wife and partner—challenges that he never had to face.

I still shudder when I try to imagine what Darrell faced with his immediate, GBM-driven retirement and the possibility of a shortened life on Earth. But I can say that I, alone, faced the possibility of life without my partner.

Our struggle was a joint struggle: Together we threw ourselves into his treatment, battling for his life, or at the very least, a few more months together.

Despite the academic knowledge that we all “live on borrowed time,” reciting that phrase was something different for me than facing the trauma of the very real possibility of an empty future: A life without my partner.

That realization shifted our roles as life partners.
    

What Do I Know about Self-care?

In the early months, I remember feeling that many people expected me to have special insights into emotional health and self-care, insights miraculously granted alongside the traumatic diagnosis of my partner’s GBM.

Really, who do you know who prioritizes self-care? Most of us just try to meet our many obligations throughout the day, right? Life is busy. Self often comes last.

I can say now that I had absolutely no tips to share with myself, no ideas on how to manage, as a caregiver, the emotional fallout or the physical strain of facing the diagnosis and the entirely new world of brain cancer, its treatment, and insurance wrangling.

My present-day self would definitely tell my traumatized, early-days-after diagnosis self: “Get help. Find someone who knows more than you do. Talk to someone about coping with trauma and caregiver stress. Learn to care for yourself now. You should have learned earlier, but be kind. Your future self will have nothing but gratitude for the time and work you put into learning to care for yourself now.”

I learned that self-care does not begin with a pedicure. (Of course, get the pedicure. Just don’t start with it. Start with your head, heart, and spirit, I would tell myself.)

Now, I can say I’ve learned so much. Now, I can give tips. Now, I tell myself things like this:
  • Put some blank spots in the calendar. When life is busy and full, adjust your expectations.
  • Admit that you can’t do it all. No human can. Treat yourself as kindly and with as much love as you would your dearest friend.
  • Sit still. Take a breath. Feel your feelings. Feel all of them. And feel them deeply. It seems to help the tough feelings pass and usher the good ones to return more quickly.
  • Write down your priorities. Commit to them. Become okay with saying “yes” and “no” when those are the right answers for you.

What’s the Name of this Race Again?

I know of no person who has achieved balance in life, with or without a GBM diagnosis. Darrell and I certainly hadn’t managed it in our busy lives before brain cancer.

But GBM changed the name of the balance game for us. Now, instead of “balancing” roles of work and leisure, “balance” has become the effort of changing focus. Of running both the sprint of today and the marathon that continues tomorrow. Of maintaining a focus on the near and far at the same time.

The GBM diagnosis panicked us and took us right to our bucket list. We tried to enjoy every adventure we might miss because of brain cancer. We lived on adrenaline, it now seems. The very colors in our world were brighter as we greedily inhaled the air of yet another morning.

Now, we work hard to balance our heightened appreciation of the daily gift of life with the need to think beyond the adrenaline-charged sprint and into the marathon, into the race that requires our energy and attention again tomorrow.

We’ve seen some of those future images (Nova at the park) that we never thought we’d see. We flew first class. We drank really expensive wine. Now, we need to balance our newfound zest for the moment with a harnessing of our energy for tomorrow. And just maybe for the day after.
   

Push. But Not too Hard.

One thing that I struggle with as a caregiver is knowing how hard to push. Should we just sit, literally and figuratively, in the safety of our comfort zones and our central air conditioning? Hasn’t Darrell earned it?

Or should I encourage (okay, push) him, lovingly, just a little? Should we live life a little closer to the envelope of what seems possible? Possible in terms of the guidance we’ve received from Darrell’s medical team. And should I push myself? Should I (and how should I) continue to develop and grow as a person made sadder, wiser, more loving, and infinitely better by brain cancer?

Life with GBM is still life.

Here we are swimming, on an Optune break, for our 37th anniversary.
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And here we’re are as newish hikers. We put our feet on the Appalachian Trail this summer.

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We are both so thankful for another new adventure together during our summer vacation in Massachusetts in 2021.

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Topics: Learning About Optune
By Andrea, Optune Caregiver

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What is Optune® approved to treat?

Optune is a wearable, portable, FDA-approved device indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.

Newly diagnosed GBM

If you have newly diagnosed GBM, Optune is used together with a chemotherapy called temozolomide (TMZ) if:

Recurrent GBM

If your tumor has come back, Optune can be used alone as an alternative to standard medical therapy if:

What is Optune Lua approved to treat?

Optune Lua is a wearable, portable, FDA-approved device indicated for the treatment of adult patients, with unresectable, locally advanced or metastatic, malignant pleural mesothelioma (MPM) to be used together with standard chemotherapy (pemetrexed and platinum-based chemotherapy).

Who should not use Optune for GBM or Optune Lua for MPM?

Optune for GBM and Optune Lua for MPM are not for everyone. Talk to your doctor if you have:

Do not use Optune for GBM or Optune Lua for MPM if you are pregnant or are planning to become pregnant. It is not known if Optune/Optune Lua is safe or effective during pregnancy.

What should I know before using Optune for GBM or Optune Lua for MPM?

Optune and Optune Lua should only be used after receiving training from qualified personnel, such as your doctor, a nurse, or other medical staff who have completed a training course given by Novocure®, the maker of Optune and Optune Lua.

What are the possible side effects of Optune for GBM and Optune Lua for MPM?

The most common side effects of Optune when used together with chemotherapy for GBM (temozolomide or TMZ) were low blood platelet count, nausea, constipation, vomiting, tiredness, seizure, and depression.

The most common side effects when using Optune alone for GBM were scalp irritation (redness and itchiness) and headache. Other side effects were malaise, muscle twitching, fall and skin ulcers.

The most common side effects of Optune Lua when used together with chemotherapy for MPM (pemetrexed and platinum-based chemotherapy) were low red blood cell count, constipation, nausea, tiredness, chest pain, fatigue, skin irritation from device use, itchy skin, and cough.

Other potential adverse effects associated with the use of Optune Lua include: treatment related skin irritation, allergic reaction to the plaster or to the gel, electrode overheating leading to pain and/or local skin burns, infections at sites of electrode contact with the skin, local warmth and tingling sensation beneath the electrodes, muscle twitching, medical device site reaction and skin breakdown/skin ulcer.

Talk to your doctor if you have any of these side effects or questions.

Caution: Federal law restricts Optune Lua to sale by or on the order of a physician. Humanitarian Device. Authorized by Federal Law for use in the treatment of adult patients with unresectable, locally advanced or metastatic, malignant pleural mesothelioma concurrently with pemetrexed and platinum-based chemotherapy. The effectiveness of this device for this use has not been demonstrated.

Please click here to see the Optune Instructions for Use (IFU) for complete information regarding the device's indications, contraindications, warnings, and precautions.

Please click here to see the Optune Lua IFU for complete information regarding the device's indications, contraindications, warnings, and precautions.

On this site, patient and healthcare professional videos as well as all images labeled as Optune users, caregivers, or healthcare professionals depict actual patients, caregivers, and healthcare professionals. All other depictions of patients and caregivers are actor portrayals. Patient images reflect the health status of the patients at the time each photo was taken.

What is Optune approved to treat?

Optune is indicated to treat a type of brain cancer called glioblastoma multiforme (GBM) in adult patients 22 years of age or older.