The role being a caregiver is a selfless marathon. It’s not a sprint.

I observed this early in my career when I was a speech language pathology assistant (SLPA) following my bachelor’s degree. I was working with the brain injured and stoke population. My heart broke for the family members, especially the primary caregiver. The medical team was focused on the patient and had treatment plans and support for them, but I noticed limited support for the caregiver whose life was also turned upside down. This is what led me to pursue a master’s in social work. I wanted to provide care and support to the family whose life as they knew it; also came to an abrupt end.

In November 2017, at the age of fifty-one, my husband Duane was diagnosed with stage III melanoma. Our only child Brian was ten years old at the time. A mole that Duane had removed a year prior with a benign biopsy result, grew back. If you or a loved one has a mole that was removed grow back again, get to your doctor right away! The second time that mole was removed, the biopsy revealed the frightening diagnosis of stage III melanoma.
This was a shock to us. The doctors explained that the melanoma was caused by sun damage from decades ago. Duane recalls being a young teenager running cross country throughout high school, often shirtless and of course no sunscreen. Ten years ago, a stage III melanoma diagnosis would have been fatal. Melanoma is so nasty, that chemotherapy cannot destroy it. The more recent development of immunotherapy is what annihilates melanoma cells.

As the plastic surgeon reviewed his plan for surgery: he would take eleven inches of skin from his back and remove lymph nodes from his nearest armpit, Duane literally had to lie on the ground with his feet elevated to prevent himself from passing out. At fifty one years old, Duane never had a surgery or spent any time in a hospital.

The treatment plan included twenty-six rounds of immunotherapy following surgery; which Duane could only tolerate six of the treatments. If the melanoma wasn’t going to take his life, the immunotherapy would have. Dying before my and our sons eyes, Duane was sicker than a dog; unable to keep any food or liquids down and slept twenty-three hours a day. His fatigue so extreme, that he had to crawl to get to the bathroom.
After the sixth treatment, Duane and I talked and we both agreed on quality of life over quantity of life. We had a decision to make. Stop the immunotherapy drug (Opdivo) and try a pill form of immunotherapy that has the potential to cause permanent blindness; or do no treatments and live what life we would have together while hoping for a miracle. At a second opinion appointment, we were informed of a “Hot off the Press” study that showed that two rounds of immunotherapy (some patients had to stop after two treatments of Opdivo for sudden heart complications) had the same survival rate at year five as the whole twenty-six treatments. We were elated – we got our miracle!

When he had his first whole body CT scan in November 2017, it detected a nodule on his thyroid. The oncologist missed that critical piece of information on the report. Thankfully the nurse practitioner in that office picked up that detail. As she did the screening questions with us before the doctor came in, she asked, “So what is the follow up plan regarding the nodule on your thyroid?” Duane and I turned to each other in full surprise. I looked back at the nurse. I said, “We have no idea what you’re talking about.”

In July of 2018, finally feeling strong enough from the immunotherapy treatments, Duane was in surgery getting his entire thyroid and some nearby lymph nodes removed. Duane had a tough go with getting his thyroid out. Five nights after he got home from the hospital, Duane was in the ER and admitted for critically low calcium levels. Apparently that can be fatal as calcium is required for our heart muscle to contract. The surgeon failed to instruct Duane to take calcium as he got discharged. WTF!???

In August 2018, part two of treating the thyroid cancer, Duane took a radioactive iodine ablation pill at UCSD. The purpose of this was to kill any potential thyroid cancer that may be lingering. As a family, we went through “quarantine” well before Covid. Duane could not come within twenty feet of our son and within five feet of me for a whole week because of the potential spread of radiation to us. Thankfully, our pups could be with him after the first twenty-four hours.He stayed in our bedroom isolated as instructed. He had a portable fridge stocked with drinks, almond milk for his cereal, grapes, etc. I would “drop off” food on my bureau in our room, tell him I loved him and blew him a kiss. He started feeling cabin fever about three days in and in his words “I didn’t realize how important human touch is now that I can’t have it” on day five of isolation.

We got the news that the pathology report of the thyroid and lymph nodes had no melanoma cells in it! That was a huge win! We celebrated. Duane was out of work for weeks as his parathyroid, which is supposed to compensate and help do the job of the thyroid, was stunned from the surgery. The symptoms of that are major fatigue, nausea, feeling depressed, cramping in his muscles, no appetite and GI issues.

Two months later in the beginning of October 2018, I was at a grocery store less than a mile away. I just got into my car from loading the groceries. I got a call from our son Brian, then eleven years old. He said, “Mom – Dad was in the bathroom screaming and crying. I asked him if he wanted me to call 911 and he said “Yes”! I just hung up with the operator. She told me to call you and to tell you the ambulance in on the way. “When will you be home Mom?”
I stayed on the phone with Brian as I drove home and I was there in three minutes. With adrenalin running through me, my hands were shaking and my heart was pounding through my chest. I walked in the house to find Duane lying on the floor crying. He was in horrific pain from continued symptoms of low calcium levels – extreme muscle cramping and severe constipation. The cherry on top that evening was that the ambulance drivers let Brian ride in the front passenger seat of the ambulance. Brian was ecstatic and those drivers that evening helped Brian have a memorable night of a fun experience that would eclipse the traumatic event of having to call 911 for his Dad. I followed in my car behind.

I am grateful that I could take that drive to the hospital alone without Brian in the car with me. I needed to call someone to scream and cry – something I didn’t do up until that point; almost a year later from Duane’s initial cancer diagnosis. I called my parents’ house who live over an hour away. My Dad answered and my Mom was out with some friends.

I let it rip as I screamed crying: “I am done with this shit! I am so fucking tired of dealing with fucking cancer!”
My Dad crying too said, “I know Steph – I know. You have been so strong. I feel so bad. I wish there was something I could do. You are so strong Steph”. I knew how he felt. I wish there was something I could do too to make this cancer fight all go away.

The ER doctor ordered a CT scan of Duane’s abdomen. I asked the doctor if that was necessary as Duane had JUST had a full body PET scan as protocol for his melanoma treatment a short month ago and Duane had been exposed to so much radiation the past year. The doctor stood by her decision and ordered a CT scan.
A MONTH AFTER DUANE’S WHOLE BODY PET SCAN, THE CT SCAN FOUND A MASS ON HIS RIGHT KIDNEY!
He had to get an ultrasound to further examine the mass. Unfortunately the results revealed that the mass was solid (not good) and was “highly concerning for renal cell carcinoma”. We saw an oncologist urologist the week of Thanksgiving and he reassured us that he did not believe that the mass had melanoma cells in it – but only the pathology report following the surgical removal of the mass would determine that.

In December 2018, there Duane was – going into his fifth surgery in just over a year with the hope of removing only the mass, and not the whole kidney. Because of the location of the mass, in the center of the kidney, the surgeon had to remove his whole right kidney. Never in my life would I thought I would be praying for something to be kidney cancer – and NOT the spread of Duane’s original cancer diagnosis of melanoma. Great news! It was renal cell cancer. Thank you Jesus!

All the prior 1,800 words were to highlight that I know what it’s like to be on the rollercoaster of being a caregiver. Here I was, finding myself in the role of the whole reason why I chose to go into social work – I was the hurting primary caregiver of the primary patient. I know what it’s like to feel helpless, scared, pissed, hopeful, anxious, overwhelmed, relieved, exhausted, livid, peaceful, stressed, joyful, and content…When I found myself in this new role, I thought to myself – “Oh shit. Now I have to practice what I preach”.
Now – my tips of how I managed to get through that difficult phase in my life:

Stephanie’s Top Twenty Coping Tools for Enduring Being a Caregiver

1) I depended on my Faith. “The Trinity” as I refer to it. God the Father, Jesus the Son and the Holy Spirit. I called on and depended upon each of them throughout my day.

2) I got a therapist. Yep; this therapist still sees the same therapist every six weeks. I highly recommend having an uninvolved person who you can say anything to, who can help you see things in other perspectives, gives support and who can help keep you accountable for making necessary adjustments to endure the caregiving journey.

3) I asked for help. People wanted to help and it was up to me to let them help and to tell them how they could help. I asked for prayers. I asked people to watch Brian as Duane and I went to his appointments and surgeries. Another thing I did was I set up a “Go Fund Me” as Duane would be out of work, I would be missing some work (frightening when self-employed) and I knew we needed to add alternative treatments to him getting well that are not covered by insurance.

4) I applied the “Serenity Prayer 101” tool that I teach my caseload. I asked myself, “Steph, what part of this do you have control over?” We only have control over our thoughts, our actions and our decisions. Period.

5) I lived by “In this Moment Mentality” as I call it. A moment is eight seconds. Imagine a snap. A moment is four seconds before the snap and four seconds after the snap. I would say to myself, “In this moment, we are all OK”. Duane may be sleeping 23 hours a day and that is exactly what he is doing “in this moment”. He is sleeping. He is OK. When people would ask me, “How are you?” I would respond with an “In this moment” answer and I was honest. There were times “In the moment” I was OK, or scared, or angry.

6) I gave myself permission to have whatever emotion I was feeling. If I was sad – I allowed myself to feel sad. If I was OK or “adjusted” as I call it, I would be OK. If I was angry – I gave myself permission to feel angry.

7) I turned to gratitude. I was grateful for access to medical care and the oncology and surgical teams. I was grateful that we had medical insurance. I was grateful that Duane had a comfortable bed to sleep in all day. I was grateful that I had the ability to compartmentalize and stay focused on my caseload during the work day and forget about the challenges at home that we were facing. I was grateful that Brian was in a school that focused first on social and emotional wellbeing and were aware of our situation and were incredibly supportive through our journey. I was grateful for running water, electricity, food in the fridge, a dishwasher, a washer machine and dryer! I was grateful for the medical advancements with treating melanoma. I was grateful that because of the Go Fund Me donations, we could afford alternative practitioners: acupuncture, reiki, chiropractor, and supplements. I was grateful that we had access to 911 when we needed it. I was grateful for the doctors, nurses, technicians, pharmacists who dedicated their careers to serving others. I was grateful for the love, prayers and support from our incredible family, friends and coworkers.

8) I kept a very honest and open relationship with God. When I was pissed, I let God know it. My favorite tool for letting my anger out….I would get in my car at the end of my work day, start the engine, do a window check to make sure all the windows were up and I would SCREAM! I would scream at the top of my lungs, “Enough! Enough God! I am done! I am so fucking done with cancer! Do you hear me!? I am fucking done!” It’s OK to be angry with God. He is our Father and we are His children. As a mother, I know when my child is angry and I want him to talk to me when he’s feeling this way. And I believe the same is true with our Heavenly Father.

9) Breathe. I would breathe throughout the day during “Stolen moments”: the ride in the elevator, driving in my car, walking to get the mail from the mailbox. It’s amazing what one clearing breath can do: it lowers the heartrate and anxiety, it stabilizes blood pressure, and increases oxygen and energy levels. It connects us with the moment. I use Dr. Weil’s 4, 7, 8 method: Inhale for 4 seconds, hold for 7 seconds and exhale very slowly to the count of 8 seconds. One round of that is a game changer.

10) I started a lot of self-care. Self-care is not selfish – it’s survival. I got a housekeeper. I got a chiropractor as I carry my stress in my jaw, neck and shoulders, I alternated between getting a massage or Reiki every week. When I got locked jaw from the stress, I went to acupuncture. Note, the acupuncturist healed my locked jaw during my session! I continued to go twice a month for stress management. I went to restorative yoga every other Sunday which I refer to as “An active nap”. I took supplements for what is called “The liver hour” to support my liver as it tried to process the high cortisol running through my system from all the stress.

11) I kept our journey on Facebook. It was a platform to journal through the process and more importantly it was a way to ask others for prayer.

12) I communicated with Duane. I let him know that it was really hard to see him sleeping all day and into the evening on the couch. I asked him to please sleep upstairs. Then it wasn’t in my face that he was so sick. There were times that I checked him for breathing (It didn’t help that his best friend Tommy from his childhood was getting chemotherapy for his stomach cancer, got treatment one day, took and nap and never woke up). Brian had shared this with me too; that he would rather his Dad sleep upstairs in his bed because it was too hard to watch. I got it. And so did Duane when I was honest with him.

13) I was honest with our son. When he asked me one morning on the drive to school at ten years old, “Mom…What are we going to do if Dad dies?” I pulled over and parked to discuss all of the questions and concerns that he had. Beyond identifying that he would miss his Dad terribly and that he would be sad and cry a lot, Brian’s greatest concern was that we were going to be homeless. I could not reassure Brian that his Dad was going to live, but I could promise him that we would not be homeless. I explained life insurance to him that morning and reviewed all the people in our life who would never let us go homeless. Brian was able to go to school that day with one of his biggest fears getting erased.

14) I read the daily devotional “Jesus Calling” every morning.

15) I utilized the “Give a Damn” concept. Each day I gave myself ten “Give a Damns” a day. It was a way to decide if something on my plate or that suddenly came across my lap so to speak, was important enough to spend one of my “Give a Damns” for the day. It’s a great way to set boundaries and to manage my stress.

16) I started saying a mantra every time I washed my hands. As I washed my hands throughout the day, I would say in my head, “I am calm. I am safe. I am protected”.

17) I allowed myself to identify my worst case scenarios. I am an optimist at heart – but my brain is full of anxiety. The way I see it is if I can identify and then process my biggest fears (thank you to my therapist Karen), I can release those fears and see a new prospective.

18) When I needed a break from being a wife, mom, caregiver, therapist – I communicated that to my husband. Both my husband and my son were supportive. I did this twice during the whole journey –and guess what? The weekend away made me a better wife and mom. And besides, my two dudes love Bachelors weekend. It’s a great time for them to bond.

19) I refused to Google statistics about melanoma, thyroid and kidney cancer on the internet. That is something I had full control over. I chose not to go down that dark hole of fueling my fears and anxieties. Full disclosure, I did it once; saw the frightening percentage of death from melanoma during the first two years of the diagnosis and NEVER Googled that again.

20) I utilized the tool I’ve taught my caseload for years. I call it “The God Ray Technique”. You know the rays of sun that peak through clouds at the beach? I call those “God Rays”. So do this exercise. Close your eyes and say the works, “Healthy, Calm and Protected”. Keep repeating those words until you see a color. Use that color God Ray to place over yourself or a loved one whenever you feel stressed or worried about someone. Instead of staying in those fears, put a God Ray over yourself, a house, a car, your loved one as a prayer of healing and protection. It works every time for me.

Thank you for reading and I hope these tools help you as much as they helped me.