When T.J. asked me to write a blog post about being a caregiver, I had no idea where to start. Should I take this opportunity to thank the countless people who have given so much love and support? Should I keep it positive, or talk about the fear constantly creeping inside my mind? Do I talk about relationships that grew stronger or ones that became strained? There are countless things cancer has changed, and only a few paragraphs to express it. So here it goes…
One thing that became crystal clear during this journey is that melanoma begins taking things away well before it takes away our loved one. It takes away hope. Not that I have lost hope, but there were times during this journey when I have felt hopeless. The doctor told us before the first trial it was T.J.'s best chance at long-term survival. The morning we heard the news "This trial isn't working for you," it was a huge blow and completely deflated us. It took a while to recover from that and regain hope.
Melanoma took away my maternity leave. Instead of mommy/son naps, leisurely afternoon strolls, play dates to show everyone our new baby, and catching up on really bad TV shows (like I did with Josie), my leave with Tommy was filled with handoffs to my Mom so I could go to the hospital or doctor appointments. I received text messages about his "first smile" and "first wave" instead of seeing them. And when I was with my baby, all I could do was be sad about what was happening to his Daddy.
Melanoma takes away joy. I don't smile or laugh as much as I did before August 9, 2012. Another caregiver said it perfectly – it's the loss of "pure joy." While I can (and often do) appreciate the joy in life, the "pureness" of it is gone. I am scared and worried, and my mind is constantly churning… has T.J. eaten enough today? Is he doing too much around the house or with the kids? Is he getting enough rest? Where can I go with the kids to give him a quiet house for the day? Has he taken all of his pills? How much does he weigh? Does he need more colostomy supplies? The mental list goes on and on.
The biggest thing melanoma takes away is your dreams. We used to talk about our family goals and where we would be in 5, 10, 15, or 20 years. We dreamed of putting a stamp in our children's passports each year, now we hesitate to plan a summer trip to the Keys because we don't know how T.J. will be feeling. We planned to renovate our home, but are instead working with the space we have. We imagined watching our children grow, get married, and have families of their own. We talked about their developing personalities, and who they will become. Now, I am just thankful when T.J. feels well enough to participate in milestones as they occur.
Melanoma does not just take things; it also replaces what it has stolen. In place of my dreams, melanoma has given fear and sadness. I am sad that our life is different now. I worry about money and insurance. I am upset when T.J. and I get into an argument; I feel like my time with him may be so short, why waste a minute disagreeing with each other? With the stress of our lives now, though, how can we avoid those heated conversations?
The thing I am most scared and sad about is that my children may not know how special the man they call "Daddy" is. I fell in love with and married an amazing man. To have met T.J. once means you have a friend for life. T.J. is the kind of guy who will drop everything to help a friend (or a friend of a friend, or a friend of a friend of a friend… you get the picture), or would make a 7-hour round-trip drive to meet you for dinner. I know this. Our families and friends know this. But will our kids know this? Will our children get the chance to know the wonderful man their father is? Will they appreciate his giving and compassionate nature, and truly understand what a great role model he is?
I watch Josie twirl around the house in her ballerina costume, dancing with T.J., and I become teary-eyed. Rather than enjoying the moment, I think "Thank goodness T.J. is having a good day and can play with her" or "Will Josie remember this moment in five years?" I miss appreciating the pure joy in these little moments, instead of worrying and being sad that future joyous moments may be lost.
Don't get me wrong, I am a very positive person and believe with all my heart that T.J. will be here for many more years. I think our children will know how wonderful their Daddy is. I trust this drug is working, and T.J. is going to beat this disease… again. Nonetheless, I read the statistics. I know the median life expectancy and was told in no uncertain terms by several doctors how long they expect T.J. to survive. I have no doubt T.J. will blow those numbers out of the water, and look forward to going back into said doctors' offices to say, "You were wrong!"
But melanoma is a thief. It steals smiles, dreams, hope and life. I hear the stories of those who don't survive. Their families were filled with the same hope and expectation of a miracle I live with every day. I miss the carefree life I had; one I never realized was so carefree at the time. In our house, there is a sign that says, "Life is measured not by the number of breaths we take, but the moments that take our breath away." Melanoma tries to steal away not only the number of breaths, but also those special moments.
I often hear our story helps others live a better life. They don't sweat the small stuff, they appreciate their spouse and kids, and overall do more of the things to live a happier and more fulfilling life. I feel jealous of them because we struggle to have that "better" life right now. My hope and expectation is PD-1 will work for T.J., his cancer stabilizes, and we can finally exhale and get back to "normal" life. But for now, as I lay my head down on the pillow each night, I simply thank God that I had another day with T.J., I ask for one more, and I hope there was at least one moment in the day when our children saw what an amazing man their Daddy is.