What I Learned About Being A Caregiver
Our cancer story started on August 20, 2011, after being married just about a year and a half, I was 28, and my wife, Katie, was 25. I got a call from Katie, a nurse at a cardiologist office at the time, while I was at work that she was having pain in her abdomen and the doctor at her office thought it was appendicitis. I wasn’t alarmed. I had heard of appendicitis. It’s something that you go in, have a minor surgery to have it removed since nobody really knows what it does for your body anyways, and life goes on. Well that is not how it played out for us…
Upon getting to the ER, Katie was worried she was going to be embarrassed because the pain had started to subside and at this point she thought it may have just been gas pain. After a brief exam, they sent her for an MRI. Time went by slowly as we waited on the results. At this point, we had let our family know we were at the ER, but they didn’t need to be alarmed. We waited more while a PA poked his head around the curtain and asked if anyone had talked to us yet. We said no, and waited more. They saw a cyst on Katie’s left ovary but couldn’t tell exactly how big or what was involved. They called in her OB/GYN doc and again he didn’t seem overly alarmed because at this point her CA125 was only 40. The OB doc thought since it was larger than he typically deals with and they weren’t sure what it was connected to they wanted to refer us to a GYN oncologist. Things were escalating and happening very fast for us. We saw the GYN oncologist the next morning for an evaluation. She had read the MRI and CT scan at this point and still was referring to it as a cyst which was in an odd way comforting. Next, Katie was scheduled for major surgery by the GYN oncologist within the week. I wanted to go on the internet and figure out all these strange words that the doctors were saying, but I showed restraint at the advice of the GYN oncologist to hold off on the internet research. We are among the blessed people to have a large family support group nearby, so we rolled deep to the surgery.
We prayed, and I was by Katie’s side in the pre-op room as long as they would let me. It was quite nerve racking in the waiting room. I was called into the conference room by Katie’s surgeon after a few hours and had most of our family come in with me. When the doc said she needed to talk to me alone, I knew our lives were about to change. It was cancer, and at this point they were definitely going to remove her left ovary and appendix and try to save the rest. After another call to the room by the doc, we found out that she came out of surgery fine, but they had to perform a full hysterectomy, removing both her ovaries, her uterus, and part of her descending colon in addition to the appendix. My first thought was how am I going to tell my wife that we cannot have our own biological kids?
When I got to see Katie in the recovery room, I was trying to hold it together and praying for strength and the right words and timing to explain everything to Katie. When she started waking up, she told me that she already knew it was cancer.
At the doctor’s advice, I had stayed off of the internet prior to surgery, but after the diagnosis, I allowed myself to start looking. The internet is full of good and bad information. Statistics seem bad every time I see them, but as Katie’s doc said, each case is different. Late that first night in the hospital when I wasn’t sleeping a wink, I searched for ovarian cancer related links near us, I stumbled upon Teal Diva. Without knowing much about it, I sent a message to Shannon Routh in the middle of the night. She replied back just a few hours later and brought one of the first smiles to my face. She related immediately to our circumstances, gave me some advice, and answered some questions I had. I have never felt more kindness and compassion from just words on a screen and I did from Shannon those first couple days. We went back and forth several times during the 8 days Katie was in the hospital. A few weeks later we drove down to Charlotte to meet Shannon at a Teal Diva event. The kindness and compassion that we felt exchanging messages became real life from the whole Teal Diva community. I met other caregivers who had been in my exact shoes and it meant the world to me to know there was other people out there not only who had been through what I was about to go through, but who were making themselves available to help me get through it. I thank God for the whole Teal Diva family and everything they do for people just like us.
This was the beginning of our cancer journey and when we entered into the club that nobody wants to join but once you are intimately touched by cancer, it is a club you will be involved with for the rest of your life. I’d like to take a minute to share with you a few things that I learned about myself and about being a caregiver during our cancer journey that continues to this day.
1. Prepare yourself mentally, physically and spiritually. Nobody should tell you that it will be easy, because it isn’t, but you can do it. Mentally, it is an exhausting experience like none I have ever had. There is a cycle of emotions from fear to anger to depression to acceptance and back and forth through them all. Mental exhaustion for me translated to the physical as well. We stress ate something fierce. I don’t recommend it because it’s like gaining the freshman 15 but on steroids (in my wife’s case literally on steroids!). We were overwhelmed with fresh and frozen meals being brought over from our church, friends and family. Katie didn’t have much of an appetite at times, but I tried to get whatever sounded appealing at the moment – this consisted of late night runs to Panera for their mac & cheese and trying out new soft drinks almost daily because her taste changed. From a spiritual perspective, our cancer journey was the best thing to ever happen to us. We have gotten to a place that we are grateful for everything we have been through because we have faith in God’s plan and that “all things work together for good” (Romans 8:28). That didn’t happen overnight, but after a long journey, so if you are angry at cancer right now, that’s ok. Let yourself feel and process however you need to and don’t let anyone force you to feel any certain way at any certain time. After a period of time, we poured ourselves into Bible study and doing so as a couple was one of the joys of our journey that continues to this day.
2. Be a guardian. We had family help us every step of the way, mostly Katie’s mom who lived with us for a while after surgery, but we had clear lines that I was the primary caretaker for the duration. I had to learn to read Katie and what she needed, then make it happen. Sometimes that meant kicking her family out of the hospital room. Yes, we are blessed with a big family, but we couldn’t have them all visit at the same time when Katie needed to rest even though they meant well. That was not easy for me to do, but it was the best for Katie at the time and they understood. If you run into similar circumstances, as caregiver, don’t be afraid to speak up. If you have to kick visitors out so you wife can rest, you can do it tactfully as best you can, but if the visitors get their feelings hurt, they will get over it, because they are not your priority right then. We had meals dropped off from people who said they “just had a little cough” so they didn’t want to come inside. I politely thanked them for the meal and put it straight in the trash can. You have to protect your wife from as many germs as possible and some risks are unnecessary.
3. Turn it into a party. We had lots of celebrations – some that were normal, some that might’ve come off a little weird to others. Katie’s birthday was a few days after she got home from the hospital after surgery so we will did cake and presents. Yes it was a little different, but you still have to celebrate. We toasted with sparkling grape juice and plastic cups in the chemo room when she had chemo on New Year’s Eve. When her hair started falling out, we had a head shaving party and made a night of it.
4. Be her advocate and be prepared. We kept a notebook of questions that we wanted to ask the doc at the next appointment and were blessed enough to have a doc that always gave us the time we needed. Taking notes at appointments pays off because it is a stressful circumstance and you will forget more than usual. Also, chemo brain is a real thing. My wife got “foggy” and still battles with it to some extent, so I had to step up in helping her keep her thoughts organized and writing them down was critical for us. With all the meds she was taking at different times, I had to make a spreadsheet to make me comfortable that we weren’t going to screw something up. I was my wife’s advocate not only in the doctor’s office or chemo room but at home as well. When she had issues such as pain or nausea and wanted to try and tough it out, I had to step in and call the doc for her. Doctors are on call for a reason, because patients need care 24/7. If something comes up after hours, don’t be afraid to call. You can’t call for every minor thing, but you will learn what is major enough to warrant it. If it’s in question, go ahead and call.
5. Know your strong suits and accept help. I am a doer; I’m not good at sitting around. But there were a lot of times that Katie needed someone to just lay in bed with her and watch a movie in the middle of the day. I am blessed to have a mother in law who has that skillset. Her mom watching TV with her and not talking was just as important as anything else I could be doing. I also am independent and pride myself on being able to take care of myself and my wife. That is not a compliment. Pride comes before the fall. More than likely, there’s going to be more on your plate during the cancer journey than you have ever had before. I had to learn to accept help from others. I could’ve left the hospital to mow my yard, but my neighbor did it for me. I was grateful and also learned that accepting help from others helps them deal as well. My parents taught me that when they were overjoyed when I called them and asked them to make a pharmacy run for us one time because I needed to stay home with Katie. Being a real man is not about doing it all by yourself, but knowing when your time may be better spent elsewhere.
6. Stay by her side, but take breaks. I went to every chemo and doctor’s appointment that Katie had and there were a lot. I know that I was blessed to have an employer who allowed me to do so without question. I know what it meant to know that she could depend on me being at every appointment with her. When everything around her seemed to be falling apart, she knew that she could rely on me to be there by her side. I know not everyone is blessed to be able to skip out of work to make it to every appointment, even my wife as the patient didn’t have that when her employer said she was taking too much time for treatment. Make it to as many as you can. I can’t imagine looking back one day wishing that I had stayed at work instead of being by Katie’s side. I had to take breaks. I got offered last minute to go to a Carolina Panthers game with a few of my buddies. I felt guilty about leaving Katie for almost an entire day, but she told me to go and it was the best thing for me. I was able to get away from it for a bit and recharge my batteries. I also used work as a break from the reality. When I went to the office, I enjoyed work more because I felt useful for something besides a caregiver, even if it was only for a few hours at a time. Keeping a sense of identity beyond cancer is important for both a caregiver. Katie couldn’t take a break from feeling bad from chemo or having a bald head, but I could and I needed to so that I could come home and have more patience and energy to be her caregiver. I don’t mean that to sound selfish, but it is important to take care of yourself too. If you wear yourself out too much and don’t take any breaks, you won’t be the caregiver that you need to be.
7. Menopause is no joke either. This may not apply to everyone but having a full hysterectomy at 25 thrust my wife into menopause. Hello mood swings and hot flashes. Soon I could tell she was about to have a hot flash before she could. Mood swings were different than a normal bad mood. If you have to go through something like this, do your best to tell the difference and be patient. Mood swings never lasted for long, and usually ended up with her apologizing because she didn’t even know where it came from either. I learned to love my wife right through the mood swings. Sometimes that got a bit messy when I smiled at her and told her she was so cute when she was angry. Here’s a principle to live by for hot flashes – you can always put on more clothes, but your wife can only take off so much. At first we had to keep our bedroom like an icebox at night for her to sleep. I had to bundle up and she would throw all the covers off several times during the night, but that’s just what we had to figure out worked for us.
8. Find caregivers for you to relate to. The bad news is until they find a cure for cancer, there are always going to be plenty of people going through similar journeys as you are. The good news is that you can rally together. We met another couple in the chemo room whose situation was very similar to ours. We are lifelong friends now. I can talk to the husband about things that we as caregivers go through or feel that our wives and family just don’t understand. Being in this club, we know we can depend on each other as fellow caregivers for anything, anytime. We’ve laughed, thought, and cried together – in the famous words of Jimmy V, that’s a fully day. We depend on each other as an outlet for what we are each going through specifically as caregivers. Our wives lean on each other for the same and have a larger support group that they meet with monthly. Exactly as caregivers can talk about things only caregivers related to, the support group can talk about things that only the support group can relate to. I had to learn that she needed that fellow support group since it was something that neither I nor any of her other loved ones could give her, only the support group could. Their support group does wonders for them every month and I do my best to make sure Katie goes to each meeting. The cancer support group does come with its share of bad days through which is just fast when you have that many people in the same club, but they support each other during the down times. It doesn’t matter what age or color you are, when you are a fellow caregiver or in a cancer support group, you can develop a bond that in many ways is deeper than friendship. I would encourage you to find like caregivers that you can form a bond with and also encourage your wife to find a cancer support that she can related to on a level that you can’t.
9. Pay it forward. As I have said a few times already, once you’re in the club, you’re in for life. I hope that you find some support to help you in your journey as we have, and I hope that you feel that tugging inside of you that wants to help others in the future whether is it fundraising and running a 5k, volunteering at the cancer center, or praying diligently for a cure and for those still battling.
10. Lastly, love her more & before. When my wife and I were trying out different churches, we heard a sermon about loving your spouse more and before. To me, this means we, as husbands & caretakers, are supposed to love our wives unconditionally and sacrificially. Unconditionally, I love Katie no matter the temporary mood swing that she throws at me, and sacrificially, I love Katie enough to put her needs before mine. Those are hard concepts to comprehend, much less live out. Yes, I screw up and don’t show Katie all the love she deserves all the time but I am human, so I’m not perfect – and I will be the first to tell you that. But big picture, she knows I love her and she knew every second of our cancer journey. Making sure she knew that each day was a priority and still is. From sleeping in the hospital room every night, to kissing her beautiful bald head, to ringing the bell at the final chemo, I love her more & before and she knows it. If you are a caregiver, it is because you love the person you are caring for. Make sure they know it each day.
Now for the happy ending….drumroll please…Katie is now over a year and a half cancer free and looks as beautiful as the day I met her. She has some scars and I have some gray hair, but we grateful for every step of our cancer journey. Our marriage is stronger now than before cancer and we are both closer to God now than before cancer. Since we are lifelong members of this involuntary club, we will never be done with our cancer journey – she still has checkups every 3 months that tie my stomach in knots – but we can live our new normal. Our new normal has different priorities. We don’t sweat the small stuff. We enjoy the simple things more. We try and eat healthy and exercise more. We try to stay involved and pay it forward. We still turn near about everything into a party. I’m still by her side and she still has hot flashes every now and then. But the best part of our new normal is we love each other more & before.
If you are reading this as a new caregiver who is trying to figure out which way is up, I hope and pray that you have found some encouragement in this. Know that there are people out there who love you and who want to help you be the caregiver that you need to be.