Wouldn’t it be great if life came with storm warnings?

A series of essays about Caregiver burnout and leading the way from a Squared Away Chief Executive Assistant on the storms she’s been through with her Veteran Husband, who is also a Chief Executive Assistant with Squared Away.

Wouldn’t it be great if life came with warnings before some of the big storms? I’m talking about a giant sign with flashing red letters telling you to batten down the hatches because it’s about to get rough. Such a simple indicator could save us all from slamming right into some of the most significant events in our life unprepared, but how would we learn the lessons in store?

It Started with the Air Force

I met my husband in a pharmacy where we were both working. He was the happy guy that never stopped smiling and joking, and I was just irritated that he was breathing all of the air in the room. I have never been the type of person to let go and be silly; my mother often says that I was the most serious child that she has ever seen. I like to call it being a realist but to each their own. He did absolutely everything in his power to get me to notice him, and it must have worked because I married him in July of 2015 in Charleston, South Carolina. He even asked my oldest daughter if he had permission to marry me and made sure that she and her younger sister were involved when we quickly said, “I do.” He is just the sweetest. He was active in the Air Force, so it shouldn’t have been shocked when he received orders in October of that year. On January 6th, 2016, we loaded up what TMO hadn’t, and we moved to Maxwell Air Force Base in Alabama, and things started to get interesting. I was in nursing school, he was working full time, and my girls were thriving and loving their new home.

We Started Realizing Something was Off

In June of 2016, Phillip started to feel run down, which was weird for him because he is the type of human that doesn’t get sick. He felt terrible for a couple of days, and then he was fine. A month later, it happened again, but this time his abdomen was swollen, and he was in a lot of pain, so he went to the local hospital. They had no idea what was wrong with him, but they could see the swelling and a possible intestinal blockage, so he was admitted for a week. They gave him steroids and antibiotics, and that seemed to do the trick, so they released him and told him to follow up with a GI doctor and come back if it happens again. Well, it did. Same story in September: terrible pain, a lot of swelling, we need answers. They admitted him again and started running a ton of tests, and he had to do a lot of that by himself because I had a five-year-old and a 3-year-old at home, and we were new here. We did have friends, but they were hours away and had their own things to handle. Such is military life. When they decided to do an endoscopy to see what they could find, I was lucky enough to find a fantastic friend/neighbor to watch my girls, and I went to the hospital.

The Day I Almost Lost My Husband

Luckily I didn’t have to wait in a waiting room because he had a room due to being admitted. They took him at 8:05, and I settled in to wait because we all know that pre-op and post-op take a while, so I was pretty surprised to see him being rolled back right after 9:00. It felt like the whole world stopped when I saw him. I knew that something was wrong because the nurse raised her voice and told him to move to his bed, and he wasn’t moving. She decided to push him from the gurney that he was on to his bed, and it was like watching someone toss a fish. He just never moved. She left without any words to me and without checking his vitals, and when I walked toward him, I figured out why I felt like something was terribly off; he was grey. Not pale, not sick looking, grey. My first reaction was to see if he was breathing, and he wasn’t. The next few minutes felt like an eternity, and I still cannot understand why there wasn’t a single nurse on the floor. No apology can fix the damage done at that moment, though I have forgiven them. I was extremely grateful for the training that I had received in school until that point, but that was the day I quit nursing school. There was absolutely no way that I was going to ever be in the position to forget that a patient was somebody’s husband, friend, son, or father and think of them as nothing more than a job. That procedure did have an okay outcome because we found out that he has a rare autoimmune disorder called sclerosing mesenteritis, but the bad part was that there isn’t a way to fix it. When he was uncomfortable, he would have to take a crazy dose of steroids to make the swelling go down. An answer is an answer, so we took it and went home to put that whole situation behind us. I decided to go back to school to get my Bachelor’s in Healthcare Administration because I was determined to make a difference. Nobody should go through what he went through, and I was going to make sure of it.

We Thought it was Just a Haircut

A couple of months passed, and Christmas was upon us, which meant the obligatory Formal Squadron Christmas party. I am the jack of all trades, so he asked me to give him a haircut, and while doing so, I noticed a dark bump on the back of his head just below where his hat sits. He made an appointment the following week, and they took a biopsy and sent it off to the lab. The results came back, and they said that it wasn’t cancer, but his doctor happened to have worked in dermatology for a long while, so he told him to get it looked at off base. It turns out it was cancer. The thing about melanoma is that it spreads quickly, so they wasted no time in sending him to UAB in Birmingham. The best approach had it surgically removed and removing the surrounding lymph nodes, so surgery was scheduled for the following week. We tried to hide most of this from the girls because we thought that they were just too young to handle this situation. It was just scary. That backfired because my oldest said that we were lying to her, and she demanded to know why her “Pup” was gone all of the time and why he was tired and sick, and most of all, why was I lying to her? We explained what was happening, and she just loved him and told him not to worry; she was going to take care of him.

Becoming a “Caregiver”

His best friend and co-worker accompanied us to Birmingham for the outpatient procedure, and we were told it would only take about 3 hours, so they took him back, and Brandon and I waited. Meanwhile, they had me sign all of the paperwork, and I was given my new title, Caregiver. That is my least favorite term to this day, and I soon found out that it was also a term that would entirely strip me of what I considered my identity.

Three hours came and went, so I asked for an update because, you know, panic. They weren’t allowed to give updates to caregivers. I’m sorry? I am his wife. “No, ma’am. You are the Caregiver, and we can’t give updates at this time.” So I waited some more making up some of the craziest scenarios in my head because, again, panic. Six hours passed, and I asked again if there was any update, the same answer. 7.5 hours passed. I asked if they could even tell me if he was alive, nope. No info for caregivers. At that point, we had been there when the center had opened, and now we were sitting in a building that had turned off all of the lights, sent everyone else home, and the only sign of life was the security guard on a Segway who rode past every once in a while. Eight hours and 45 minutes after he should have been done, a nurse popped her head out and said, “If you’re the Caregiver of DiRoma, you can pull your car around as soon as you’re done with the doctor. He’s done.” I wanted to know what went wrong, but the doctor said everything had gone great; he got good margins and removed enough lymph nodes to biopsy though he felt pretty good about the cancer not having spread. Brandon grabbed the car because he is a saint and is one of the calmest men in a storm, and I went back to see my husband. He was in a great mood but wanted to make sure that he was still pretty, and the nurse wanted to make sure that I knew how to change the dressing, so she removed his bandage. It was awful. There aren’t any other words for that wound other than terrible. The doctor got margins so great that he couldn’t close the back of his head, so he just had a giant hole kind of stitched together, and I could see his skull. As a wife does, I assured him that he was still pretty, and Brandon drove us home.

This is where I want to remind you that I had a five and 3-year old at home, and I spent the hour and a half in the car trying to figure out how I was going to explain to them that he was fine. It wasn’t like I could hide it; it was literally a hole in his head! It turns out; I had nothing to worry about. My brave, beautiful, compassionate babies weren’t afraid of anything that was thrown at them. Maddi watched the clock and waited for the time so that she could change his bandages because “Pup needs me, mommy. I’m helping him.” Kailen slept either beside him on my bed or the floor by him because “Mommy, you’re so tired. I’ll take care of Pup! I promised I would.” I was struggling and scared to death, and here were these two young ladies stepping up and making sure that we were both taken care of.

There Were No Warnings for Caregiver Burnout

The results came back from the biopsy, and the doctor had been wrong; the cancer had spread, and it spread into his lymphatic system. That meant that it could now travel anywhere in his body, and it would happen quickly, so they scheduled another surgery. They took more lymph nodes, found more cancer, and scheduled another surgery. This went on a total of 4 times. They weren’t trying to keep the scarring at a minimum; they were trying to save his life, so each surgery left him with less mobility in his neck and shoulder and more and more scarring.

They finally had a surgery that returned no more cancerous cells, so we followed up with the Oncologist, and he said not to celebrate. This was Stage 3 Metastatic Melanoma, and it wasn’t gone; it was hiding. He had seen this before, and my husband had four months left if he was lucky. It is important to note here that I was deep in the thick of Caregiver burnout by this time. I had utterly quit taking care of myself, and I would go days without sleeping, a week or so without eating, and my sole focus was him and the girls. Nobody had told me that this was even a possibility, but I had landed myself in the darkest and loneliest time of my life because I had neglected even my most basic needs. It takes years to recover fully, but you have to start taking care of yourself, and I never did.

I have no idea what happened in the days following that appointment, but I do know that we planned his funeral, got his affairs in order, and hopped on a cruise headed for the Bahamas with our best friends. Brandon and Michelle were the reason we kept our sanity, and they made sure that we made as many memories as we could in the time we had. I mean, my husband licked a stingray, and I have picture proof, talk about living it up! We enjoyed our week away and then came back to reality. He decided that he wouldn’t do chemo; he just wanted to wait, pray, and see what happened with the PET scans. The next part is a miracle. Every scan over the next six months came back clear. Then the following year. This wasn’t remission just yet, but take that, Oncologist!! He made it past that four-month window! He still had flare-ups from the autoimmune disorder, but he would take the steroids and be okay. We were on cloud nine! The girls were happy, Phillip was back to progressing in his career, and I graduated with my Bachelor’s Degree and landed a pretty cool job that allowed me to travel. It seemed like our storm had passed.

The Storm Warnings We Had Wished For

Fast forward to late 2019, and I wish we could have gotten one of those warnings that I talked about earlier. All of his scans up until this point had been fine, but he was having so much trouble with his autoimmune disorder. He was in pain, and one flare-up led to another, so he took many steroids, which causes its own issues, but this was normal, so he just pressed on. In December, he had another PET scan, and his Oncologist said that there had been some spots on his scans this whole time, but he had thought it was the autoimmune disorder, or it was just inflammation, but he wasn’t sure anymore, so he referred him to another oncologist. The answer was another surgery.

Everything had been so good for such a long time that this was extremely shocking to both of us. I am not ashamed to admit that I had never been able to handle him having surgery very well, and it just seemed to get worse every time. I had spent so much time avoiding dealing with any of it that it all boiled over, and I could no longer avoid it. He prepped for another surgery, and I started therapy where I learned that my anxiety was a trauma response and that I have PTSD from everything that happened in 2016/2017 and anticipatory grief, severe anxiety, and caregiver burnout. The PTSD and anxiety were from the traumatic events, and it‘s why I come unglued and cannot breathe if my husband is out of my sight at any medical appointment, even just a simple check-up. In my mind, I cannot trust them to keep him alive, and I can’t save him if I cant see him. The caregiver burnout is noticeable; I didn’t take care of myself because I thought that was selfish, but now I have significant regrets and am still working on healing. Anticipatory grief is the one that I never saw coming.

When I was told that he had four months to live, I started grieving without realizing it and never stopped. It is literally like waiting on the other shoe to drop all day, every day. He had his surgery, and I received a call from the surgeon while still in the OR with my husband. It is cancer, but it is a different kind of cancer, and this one is trickier. We went to the follow-up appointment, and it was all explained to us. He has a form of lymphoma that cannot be cured, only managed. For the rest of his life, this cancer will grow, and they will give him a treatment (not chemo but close) to shrink it, and then we will wait. We also found out that all of those steroids he had been taking to keep the autoimmune disorder at bay had been feeding cancer, so now that was no longer an option. The thing about this cancer is that it isn’t seen in young people like him, so they have no idea how much time he has. We don’t know when, but we know for sure that cancer will take him from us sooner than we want it to.

This is a lot. It was a lot to process and a lot to live through, and I would be lying if I didn’t tell you that my response to most of this when it was happening was, “Are you KIDDING ME? Why? Why me? This cannot be my life!” I wanted to know why this mountain had been placed in my way. I am a human. I am a human that is not perfect. I have flaws, and I am working hard now to take care of my mental health when I should have been doing that for years, and it is hard. I have wanted to quit more times than I can count, but I didn’t. In the middle of the first round of his cancer, I pushed and got a Bachelor’s degree in an accelerated program and started my Master’s, which I will be graduating with this Spring in two separate honor societies. I handled being a caregiver to my husband (not well, but I handled it), and my daughter was diagnosed with a sensory processing disorder and so many other things involving every single member in our household. I involved myself in a program on base to help others because I was determined to prevent a single person from dealing with a situation like ours alone. I received a Diamond Sharp award for those efforts.

Final Thoughts on this Mountain

The mountain wasn’t placed in my way; it was given to me so that I could lead the way and show others that it can be moved and so that I could teach them from my failures and experiences. I know that we have been through a lot, and I know that there is more to come, but how I deal with those situations is entirely on me.

Of course, I have days where I don’t get out of my pajamas all day, and I sit and stare at my phone for hours. It’s necessary to have those days and actually to feel what I feel because I am a human, and it is valid, but it is also my decision to stay in that state. The next day, though, I will wake up, and I will decide that I will have a good day. I decide that I will give my job my very best effort. My husband and I both decide that we will go out and live our lives to the very fullest and have no regrets about what could have been or should have been. These decisions are mine to make, and I choose happiness, life, leadership, and guidance.

Brene Brown said it best when she said, “One day you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide” and that is how I choose to live my life because it is my choice and I am getting pretty good at dancing in the rain.

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