The fight or flight response. One of nature's most well known reactions. When facing a dangerous or potentially life threatening situation, a person (or animal) might have two responses - to fight the danger or to flee to safety.
When Maia was first diagnosed with cancer at 3 years old, as a mom my natural instincts kicked in. My immediate reaction was to face it head on and do whatever I could to help her beat it. My fight mode took over without me even realizing it. And, in every scary situation that came up (her getting a blood clot, middle of the night ER visits, scary blood counts, infections, tachycardia), I was able to stay level headed and calmly do whatever I had control over doing in order to make sure she got the care she needed and felt safe and happy through it as much as possible.
Most people have this reaction to cancer. Whether it is the person fighting it themselves or someone close to them fighting, we call it a fight for a reason. That fight response takes over and it is all we can do to face it head on. But, what happens when there is nothing left to fight?
As we got closer and closer to the end of Maia's nearly 2 1/2 year treatment, my flight instinct came alive inside of me. My whole world has been consumed with fighting cancer, Maia's whole world had been consumed with fighting cancer. It is who we are. Maia doesn't even remember what life was like before her cancer, she has been fighting for almost half of her life. And, I was under some crazy impression that once her cancer was gone, the fight would be over and that would be it. We won. The threat would be gone.
And while the immediate threat is gone, there is always a chance of relapse. But that isn't the main reason I want to run. The main reason is that, while the cancer treatment is over, nothing else is. Maia will continue to get blood tests every month for a while. They will get farther and farther in between, but she won't be considered cured until five years from now. And while the cancer is gone, the side effects from the treatment are just starting to pop up. Besides the physical therapy that continues to strengthen her legs and the fractures that are still healing in her ankles from the chemo and steroids, we are starting to see some cognitive impacts of the treatment. And I worry that it is just the beginning. Common late effects of cancer treatment in kids includes (but is not limited to) learning problems, abnormal bone growth, thyroid problems, vision problems, dental problems, lung, liver, and kidney problems, hearing loss, delayed sexual development and fertility issues, and increased risk of future cancers. COMMON late effects. Some of which we are already starting to see.
Sometimes I wonder why this poor girl can't catch a break. And then I remember that there are other kids who are still fighting, or have relapsed, or have lost their lives, and I realize that this IS the break. Survivor's guilt is also a real thing. Knowing that so many are still fighting for or have lost their lives. Knowing that those families are in pain that we can only begin to imagine in the worst thoughts we can fathom. It is all around me. And when it is other people and not us, I don't know how to fight for them. As much as I want to. And I'm stuck, watching a threat that I can neither fight nor run from.
And I want to run. I want to run from it all. But I don't know where to go, because this is not the same world that I used to live in. And I'm not the same person that I used to be. I don't know myself anymore. For better and for worse. I am stronger, more confident, more appreciative, and more efficient than ever before. I am also more volatile, less considerate, impatient, and tired. I am changed. And so is Maia. And she can't understand why, now that her leukemia is gone, she still can't run as fast as other kids or keep up with activities. I've watched her become more frustrated and sad when she can't do things other kids are doing, and I worry that she will start to feel like it defines her. And while I'm glad she won't remember a lot of her treatment, she also won't remember the strength she had to get through it all. She will only see the lasting impact it has had on her. So here we are. Once again, we have to figure out how to mold into this new life we are starting to live. And we have to recognize that while the cancer is gone, the impact is lasting. And through that, we are grateful to remember that we are the lucky ones. And we hold onto that as we have good days and bad, because a bad day is most certainly better than no day at all.
I don't know if this will be my last post about this journey. I do know that this is the close of a chapter and the start of a new one. It is not the end of our cancer journey, because everyone who has had cancer in their life knows that the journey never ends. There is no life without cancer once it has had such a big place in your life. There is only life after cancer, and this is the beginning of ours. And while I may want to run, I've decided that I won't run away. Instead I will run at whatever this next chapter brings and meet it head on. We may have nothing left to fight, but we have a lot to overcome, and that we know how to do.
Maia's treatment is coming to an end in just a month and a half. When we found out that Maia had cancer, just over two years ago, I thought that we would never see the end of her treatment, and now we are so close I can't even believe it. I've written a lot of things as we have gone through this journey, and to be honest I haven't written in a while because I felt like I was out of things to say. Or at least insightful things to say. And I'm pretty sure I still am. But, insightfulness aside, there are some things I haven't said. Some of them I haven't said because they have been held too close to my heart. Some might make me look bad, which isn't actually why I haven't written about them. I've been more than happy to lay it all out there on multiple occasions, but I guess it has taken me this long to process some of it. So, as we come to the end of this treatment and on to whatever else life brings us, here are the things I haven't said...
1. Maia doesn't know what leukemia or cancer is. Not really. She knows that the cells in her blood made her sick. She knows she has to get treatment and take medicine. She knows the side effects of that medicine and how they make her feel. She knows that she can get sick really easily. She knows she is different. But she doesn't know that her illness is or has ever been life threatening. She doesn't know that most kids don't even know what cancer is. She doesn't know that cancer is what killed her grandmother just a month and a half before she was diagnosed. In fact, we only called it leukemia for a year after her diagnosis because I was afraid she would make the cancer connection to her grandmother. And I'm grateful that she doesn't know any of this because she hasn't had to worry about it. But, I know that one day she will know and I'm afraid that she will worry about it. I'm afraid that if she relapses she will definitely be old enough that these are all things that she will have to know. And if she doesn't (which is what we are aiming for), I'm afraid that all the worry she got to avoid these past few years about that will all catch up to her anyway.
2. This is my fight, and it is lonely. There are three parts to a cancer fight: the physical fight, the emotional fight, and the mental fight. Physically, this is Maia's fight, and I wish that I could take that away from her. She has been put through so much. She has dealt with pokes, medicines, blood clots, surgeries, side effects, nausea and vomiting, hair loss, bone loss, fractures, muscle weakness, and so much more. She has also had to deal with emotional things. In the beginning, all of the pokes and dressing changes were scary. Now, they are old news. But the steroids took an emotional toll each month as they made her so miserable. She has been through more than any child should ever have to endure.
But mentally, this is my fight (with emotional mixed in - we share that). I keep track of the medicine, the side effects, the questions and communication with doctors. I wake up in the middle of the night freaking out that I forgot her medicine or accidentally gave her the wrong day of medicine. I've planned my child's funeral in my mind and locked myself in the bathroom so that I could cry on the floor without her seeing. I've googled and researched so many things, from treatment options to side effects. I've learned how to read blood test results and give chemo through a port access. I can clean PICC lines and I know the difference between colors of heparin. I'm the only one who knows what medicines she gets, when she gets them, and the side effects each one causes for Maia personally. And I'm the one who panics when she starts showing any symptoms that remind me of her diagnosis.
All in all, I'm so glad that I get to share her fight with her. I'm glad that she is young enough that there are parts of this fight that I get to take for her - because it isn't that way when a child is older or when an adult is going through treatment. But it is hard, it is lonely, and it is my fight. Even now it is hard for me to admit any of that - it seems selfish to take a part of her fight as my own. But I think it is important to acknowledge, because letting people in on that secret might help it not feel so lonely any more.
3. I have anxiety. A lot of people do. But mine makes me a crappy parent and a crappy person. Sometimes a life changing, life altering experience makes someone a better person. People learn to appreciate each and every day as a gift and recognize the small things in life that are the true blessings. With that new found joy for each day, people make the most of it and do amazing things. That isn't how it works for me. Not because I don't see each day as a gift or recognize blessings. I do. But because I'm exhausted. When my kids want to play a game with me, I often say no. I have too many things going on or I'm so tired. I get frustrated easily. When I'm feeling anxious about something it takes over my entire brain and it's all I can think about. So, when someone tries to talk to me, I completely flip out. My mind is full and there is no room for anything else, and so I yell at the people that I love most for no reason at all. And the problem is, because I do see each and every day as a gift with my kids (more so than before this journey), the guilt I feel when I'm not being the most accessible mom is 100 times more than it would have been in the past. And after I rush everyone to bed at night and yell at everyone for getting out of bed for the 50th time, I feel all the mom guilt rush in and promise to be better tomorrow. And then I'm not. It's a work in progress.
To me, this is the worst type of anxiety because it impacts other people. I would much rather have a panic attack (which I'm no stranger to either, by the way), because it mostly only impacts me. I can sit in a room and completely freak out and no one will know. But, when I'm dealing with the regular anxiety that makes me a monster mom, friend, daughter, wife, etc., it is the people around me that have to suffer. I have to listen to people tell me that I am a horrible mom and person, and there is nothing I can really do to defend myself, because it is true. And that is way worse.
4. I'm grateful for this experience. As much as this experience has clearly made me a worse person, it has also made me a far more aware one. When Maia is inpatient in the hospital, she is considered the healthy one. If they need a bed on the oncology floor, she tends to be the first one the move to another floor. While this is super annoying (cause the people on the other floor don't know what they are doing as much and I have to be way more on top of people), it is a true eye opener. Our situation is NOT a bad one. Things are put into perspective really fast and very often. First of all, the oncology floor is often FULL. There are kids on that floor that are stuck there for far longer than Maia has ever had to be. There are kids that may never leave. There are families trying to figure out how to tell their kids that they wont live, or their other kids that they wont have a sibling any more. And that is just one hospital. This is happening all over the world. And this is just one of the many problems that needs to be fixed in the world. And we all have the power to make a difference, big or small. And big or small, a difference is a difference, and it is worth making.
5. I always knew that Maia would get cancer. I know that sounds ridiculous. This is the one I mentioned earlier that I have held too close to my heart to share. But it is an important part of this journey and something that I can't deny, so here it is. From the time that Maia was a baby, I would have flashes of her bald and sick (and she always had hair, even as a newborn). I would be giving her a bath, tucking her in at night, or checking on her in the middle of the night and I would picture her without hair and lying in a hospital bed. This was a regular occurrence. At the time I thought I was crazy. What kind of mother pictures that? It would bother me so much that it became a regular part of my daily prayers that my kids would never get sick like that (I say kids cause I included Anden, but I never pictured this with Anden at all). I would worry often that something like that would happen to my kids. And I could never completely shake the feeling, no matter how much I told myself that I was being ridiculous and that the though of that probably crosses every parent's mind at some point. But this was different.
Now that I have watched my child sick and hairless and in a hospital bed, I feel as though I was being prepared for something. Maybe you think it is crazy, but I know without a doubt that I was being prepared for Maia's fight. I believe that I was being prepared by God for what I would one day have to watch my child endure. But no matter what you believe it may have been - maybe a sign from the universe, maybe mother's intuition - the truth is that I always knew, deep down, what was to come.
Cancer is a rollercoaster ride, full of so many things. We are all different people now than we were when we started this journey. There have been ups and downs, we have all gotten both better and worse (and I just keep hoping that the better is outweighing the worse). I do know that Maia is still one of the strongest and sweetest people that I know. I don't know what the future has in store now that Maia is almost done with treatment. But, I do know that this particular chapter is soon coming to a close.