The Heart of a Caregiver

Dr. Nina Rickenbacker Edwards lost her daughter Teolita to cervical cancer in 2019. Teolita had been an active member of Cervivor and a proactive advocate about cervical cancer. “Whenever or wherever Teolita was given an opportunity to speak, she would use that time to raise awareness about cervical cancer,” Nina reports. In honor of her daughter’s mission to outreach and educate, Nina shares some lessons and perspectives on caregiving for Caregiver Awareness Month.

My daughter Teolita passed in August 2019 – just a few weeks shy of her 39th birthday. During Teolita’s cancer journey, I reflected on the many roles that Teolita said I had played in her life: teacher, preacher, doctor, chastiser but most all, mother and best friend. Later during Teolita’s journey, I had to officially add the role of caregiver and provide support and care for my independent, brave and strong adult daughter when her physical health was waning.

I learned that there are some key characteristics one must have  – or develop – to be a loving caregiver: a heart that is full of compassion, joy, peace, patience, kindness, goodness, and gentleness.

  • Compassion comes from within. You understand what someone else is going through. You strive to do all you can to connect with the person you are giving care. 
  • Joy comes from accepting the challenge of taking care of someone and knowing that you are providing them with all the care and support you can provide. You feel useful, needed, and even gain a sense of purpose.  
  • Peace can be found in caregiving, regardless of the circumstances you are confronted. When you know that you have done all that you can, even if negative situations arise you can find peace in knowing that you gave it your all. 
  • Patience is a requirement for successful caregiving.  Patients needs can change daily, so you must be able to adjust to change on short notices. 
  • Kindness, goodness, and gentleness are essential to meeting and managing the needs of those in are care.

It was painful as a mother to see my daughter suffer. It was hard to watch my daughter fight with all she had. Teolita had such drive, determination, resilience and passion. But even in my own pain, I learned that as a caregiver, when we care for others from the heart, we can adapt to the circumstances and conditions of the loved one under our care.  In doing this, I received a profound sense of purpose and satisfaction knowing that I had a direct impact on the quality of my daughter’s life.

The advice Teolita would share with so many women was “you are braver than you believe, stronger than you seem, smarter than you think, and twice as beautiful as you would ever imagine. Never give up, never give in. You had cancer; cancer didn’t have you.”

I think this advice applies to caregivers too. You are braver than you believe and stronger than you ever envisioned you could be. Be good to yourself so that you can give care with a full heart. As caregivers, we give so much of ourselves. Take a break and recharge.  You cannot possibly take care of another person if you are not physically and mentally healthy yourself.

To honor her daughter and continue Teolita’s mission of education and cervical cancer prevention, Nina and her community host an annual Teolita S. Rickenbacker Cervical Cancer Awareness Fundraiser Luncheon. See news coverage and TV clips of the January 2020 event.

Here I Go Again On My Own: Quarantining (Again!) in 2020

Cervical cancer survivor, graphic designer, frequent journal-er, and now published author Andrea Bonhiver has been experiencing “quarantine flashbacks” amid the current COVID-19 pandemic:

“I spent March 7 to April 22, 2019 basically quarantined in my apartment after surgery for cervical cancer. Here I go again in 2020! Who would’ve thought?”

The feelings of trauma that come with having cervical cancer are VERY similar to what many people are experiencing during this pandemic, Andrea reminds us. “I lived with these feelings of anxiety and uncertainty on a pretty constant basis for 2 years: 

✓  A scary diagnosis. 

✓  Living with something that is potentially life-threatening. 

✓  Not being able to do the things you’d normally do as freely as you’d like. 

✓ Fear and uncertainty about EVERYTHING. 

✓ Questioning everything in my body that feels a little bit ‘off’ and constantly wondering “is that normal?” (As in: My breathing feels tight. Is that a symptom? Is the cancer spreading? Do I have COVID-19?!)”

Amid the physical isolation that many are living through to protect themselves from COVID-19, Andrea doesn’t want anybody – especially not cervical cancer survivors – to feel alone. Certainly not the type of alone that she felt when she received her cervical cancer diagnosis. She’d gone looking for hope and information “in the blue light of the internet” but found mostly “scholarly articles, or scary ones about the invasive and painful treatments I might need, or about survival and recurrence rates. Cold hard facts but very few real-life stories.”

So she wrote her own. Not just as a Cervivor story for our website, but a book: The Cervical Cancer Companion – written to help others “process the trauma of cancer as you experience it.”

Now, Andrea is looking back on her post-hysterectomy, post-surgery isolation to share tips on how to get through the anxiety and isolation many are feeling with the current COVID-19 quarantine.  

Andrea’s quarantine tips for our Cervivor community:

1. Create a “What If” journal. When you feel overwhelmed by the uncertainty and fear, sit down and just let it all out. Bullet out a list of everything you’re afraid of and worried about. Irrational or fully logical. Let it all go. Then go back and try to come up with a statement for each one. “If this happens, then_____________.” You might find that the outcome of each worst fear is not as catastrophic as you have imagined in your mind. And if it is? You *will* make it through.

2. If you need help? ASK FOR IT. I am not at all surprised that as a society we have risen up to support and encourage one another. I saw this first-hand throughout my cancer journey and it was a real window into just how GOOD and SELFLESS people can be. People want to help because they’ve been helped by others, too. Don’t be afraid. Asking for help isn’t a sign of weakness, it takes guts and if that’s not strong, I don’t know what is.

3. Know that you will grow through this. There are always things to be learned. Areas of our hearts and character will deepen and be strengthened through this. Getting stronger and becoming better people is never not painful, but is always a positive thing.

4. Remember that psychological and emotional trauma takes a toll on cognition. EVERYTHING HAS CHANGED. We should not expect our memories to work as well as they did before, nor should we expect ourselves to be able to recall all of the information we had at front of mind before. Go easy on yourself. Lower your expectations for yourself. Do your best.

5. Tend to your emotional health. Check in with yourself. Ask yourself what you need. Write. Pray. Cry. Laugh with friends over Facetime. Grieve if you need to. Rejoice if you want to. Just don’t act like nothing has happened.

6. Manage “The Wait.” I created a few pillars of self-care during “The Wait.” When you have cancer, “The Wait” is the time between your test/treatment/surgery and receiving the results. It’s long, it’s miserable, it’s anxiety-inducing. So we need distractions. For this 2020 Pandemic, the shelter in place orders are our “Wait.” Here are those pillars that I think can get us through:

  • Support: Who can you call/visit with? Make a list.
  • Counseling: There are counselors all over the country doing Facetime sessions, if you are struggling. There are also counseling and meditation apps that are helpful.
  • Movies/TV: Don’t shame yourself for seeking a mental escape. It’s necessary to give your brain a break in times like this. I personally found it comforting to watch shows set in other time periods, or movies I enjoyed from my childhood.
  • Books: Many libraries have an app called Libby where you can check out ebooks and audiobooks if you run out of books in your home.
  • Music: Make a playlist of songs you find uplifting, soothing, or calming. Go to it when you feel overwhelmed.
  • Move Your Body: Many of us can’t do this during or while recovering from treatment, but if you can, go on walks! Do some gentle yoga. Find ways to bring motion to your system and shake off the anxiety. 

7. Grief and Gratefulness: These themes will carry us through this tragic season in our world. Make a list of what you’re grieving and another list of what you’re grateful for. Keep adding to it every day. Eventually, I believe our gratefulness will outweigh our grief. ONE DAY.

How are you surviving quarantine? And if you are in a place that isn’t under “stay at home” orders, how are you managing any COVID-19 related anxiety? Do you have a unique experience with it as a result of your experiences with cervical cancer diagnosis and treatment? If so, please share with Cervivor via the comments below or email info@cervivor.org 

Andrea Bonhiver lives in Minneapolis with her husband and dog. Diagnosed with adenocarcinoma in situ at age 33, Andrea journaled throughout her cervical cancer diagnosis and radical hysterectomy as a way to process her emotions and release her “anger and heartbreak onto a bright white page.”  She decided to share her story and experiences as a book to help others going through cervical cancer know that they are not alone. Her book, The Cervical Cancer Companion, includes personal journal entries through each stage of her experience, prompts to help readers process and record their own journey; practical tools like caregiver calendars, medication trackers and shopping lists; and mantras to keep your mind centered.

Read Andrea’s Cervivor story