This picture is of me....Waiting in the PACU while my son received radiation. That sign I am holding... actually wasn’t for this blog....My sister-in-law asked me to hold up the words "and a future" for a scripture collage she did with 11 other wonderful ladies, but she chose that part of the verse for me. But I failed to read the instructions carefully and well enough (haha! oops for skim reading), so I wrote the word "FUTURE"....not “and a FUTURE”. Ironically, what had me down all that week was just this word. I had spent time praying early in the week and the theme of future was something that I contemplated during my prayer, and as I reflected on this word, it sure did hit me hard. FUTURE. Or for a cancer parent, FUTURE is truly anxiety and uncertainty of our FUTURE.
Jeremiah 29:11 New International Version (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
I remember the time when I would look at all my children and find myself excited about who they were growing to be and who they would become. The dreams and hopes you have as a mother for your children to find love, find purpose and live out a life full of passion and direction brings you joy, daily. As a parent, you naturally hope that your kids will find their passion as early as high school, find that "puppy love" and eventually go to college, grow into their true and authentic self and find a spouse and eventually have children of their own and live out their days being amazing. We, as parents, walk the fine line with our children of "what I wish for you" and "you get to choose your path in life", so our dreams of their future are kept in check (mostly) but you dare to dream anyway. But in all those visions, you imagine time and joy in the future for your grown child.
As a mother to a cancer child, realizing that the future is so unknown is terrifying and sickening. You want to do your best to keep your anxiety in check and to remain positive and optimistic that your child can beat cancer for good, and they will have a chance of normalcy. However, the reality is that unfortunately, looking into the future is something almost too scary to think about for us. And we no longer have the same ability to naively think about the future. Even if our child beats cancer.
My son's scans show NED (No Evidence of Disease), but that anxiety that looms over us for a fear of relapse is real. We rejoice in the blessing of his current prognosis but we have learned to live life moment by moment and day by day. We reign in our thoughts when we start to think about the future. We don't know what that will look like, even if we are blessed enough to have him survive with a remission for 5, 10 or 20+ years. Because, not only do we worry about relapse, but we are looking at short term and long term side effects, and you don't know what they are until they start popping up. But doctors give you possible side effects, and each one you hear is like a punch to the stomach....even if it is just a possibility it could happen.
Most people think, "Yay! They beat cancer! They get to live life with a Happily Every After" ending. But even if our child beats cancer, cancer leaves both physical and emotional scars. Will it be visible "disfiguration" or missing body parts? Will it be side effects not visible to the eye, such as maybe living with chronic pain? Will it be "Chemo Brain" long term, or clumsiness, or delay in cognitive abilities? Will it be neuropathy pain? Low self esteem? Depression? Being super conscious of all the scars and physical changes to their body? and their own fears and anxieties of relapse or being different in a way they never chose. These are all from just a very short list of some of the things these kids have to deal with after the cancer is gone. And it's a summary of what our future holds.
We struggle to plan for future family vacations, either during treatment or off treatment, because we learn that we can't really plan for the future and how our child will feel 3 months from now. We learn to watch, observe, analyze daily symptoms and "triage" any symptoms when necessary. We learn that there is no "normal" in chemo or radiation. That your child could do great one week with certain prescribed medicine and take the same treatment drugs a few weeks later but then need to change things up because they aren’t working anymore. There is no way to anticipate how your week will look, much less how your months will look. So you can't expect a "normal" or try to get into the rhythm of a new routine. You just learn to expect the unexpected and try to have a hospital bag packed in case you have an unexpected hospital stay. And if we want to travel, we plan around being near enough to a quality hospital in case you do have an unplanned hospital admission, and have a plan in place for how long it will take you and if it's within the recommended time limit to get your child to a hospital to avoid sepsis.
This is very much different than before having our child's cancer diagnosis. We would talk about vacations months in advance and we knew that there would be a chance that our kids could be sick during that trip, but the chances were unlikely. Before cancer, you take so much joy in the moments that your child is living his or her best life, and he or she is healthy enough to live out what ever his or her dreams are. You want to be an astronaut or pilot?? Sure kid!! You can do it!!! But now it’s a prayer that they get to live out their dream and that the side effects don‘t interfere with their pre-cancer potential.
You watch as all your children play well together and are filled with pure bliss in your heart. After a cancer diagnosis, those moments are so bitter sweet because you know how much the family struggles for normalcy, and you are uncertain how many more memories you will have with all your kids together, but you cling to hope that they live out more than you could ever hope for. But, unfortunately, not all cancer kids survive. And for some, today is the last day to make memories, and their future is filled with "How will my heart survive this?"
The Future is so unknown for a family dealing with pediatric cancer. We pray and hope that our child will beat cancer for good. But we don't know. We just don't know if we can let ourselves breathe at ease. If we can let ourselves dream (at least how we used to). We try, but it's hard. Every small bump or every small ache our child has, triggers our anxiety and fears and we feel the rush of panic as strongly as when we heard “your child has cancer”. Is the cancer back? Is this sign that he or she has cancer again?
The future is unknown for everyone, I get it. But for a parent dealing with pediatric cancer, the future is scary. We want to dream like the days before diagnosis. We long to allow ourselves to hope and dream and believe that it's all possible. For some families, it will be possible to dream of a future with pure faith and optimism. But for the vast majority of cancer parents, we have trained ourselves to think of the present, hope for a future, but take in every second that we can and fight like hell. And we take comfort in holding our child for yet another day, or another moment longer.
If you are struggling with the future.....
Living in this state of fear for the future can lead us into a very dark hole if we allow our fears to spiral out of control. If you find yourself struggling with the concept of “future”, here are a few tips for dealing with the extreme anxiety of the future:
Allow yourself to feel fear. It is absolutely EXPECTED for you to be afraid. What you are going through is terrifying. If you aren't a little bit scared, then you possess super human powers. Tell yourself, "It is ok to be afraid. What I am dealing with is very scary." But then remind yourself “Stay PRESENT, because the future is unknown. Your child could beat this, or he could not. You just don’t know, and there are testimonies of people who were given a small chance to survive and yet they have!
If you find yourself having obsessive thoughts about a fear of the future, Identify what triggered your fear. Is it something you read in a support group, or something you have experienced through people you know? Or did the doctor tell you some new information that you weren't expecting and you are trying to process the new information? Figure out what pushed your fear over the edge and again, remind yourself, "FOCUS on TODAY." Nobody expects you to have the strength today for the things that tomorrow brings. Just like nobody expects you to run a marathon without weeks of training. Every day you are building strength, even if you don't feel like it. Every day you have chosen to take a step forward and not give up and give in to the fear. That takes COURAGE and STRENGTH. More than you know you have and more than you ever had.
Your child has his or her own journey. Don't compare your child's progress and struggles to other cancer kids. Every child is biologically different and there are so many factors to each person and each case that it's IMPOSSIBLE to compare. Stories of other kids can be sad or they can be encouraging. Cling to whatever hope you have, even if it is by a thread. But don't let the dread of the worst be what you cling to. It will only take away from your valuable time with your child.
Don't think of the worst case scenario. I used to use this technique with clients (not dealing with terminal illness) of "What's the worst case scenario?" and talk through a plan to overcome those fears. You can't do that when dealing with cancer. Don't think of the worst case scenario. Don't let yourself go there. We know what the worst case scenarios could be..... Tell yourself to "STOP!!" if you do start going down that rabbit hole. Remind yourself where you are today and that if you have to cross that bridge of "worst case", only THEN can you let yourself feel those feelings. But for now, those feelings are draining to your mental health for something that hasn't happened and you have enough to worry about today. Keep the strength you have for what you are actually facing today. And some days are good. So rest physically, mentally and emotionally in those days.
If you are in the rabbit hole, train yourself to use your senses to keep you grounded: What do you see? What do you smell? What do you taste? What do you physically feel (Wind on your face, beads in your fingers, rain on your skin, etc) What do you hear?
Nobody can say with certainty what their future holds. Parents dealing with pediatric cancer just have a level of fear and anxiety, but with just cause. And it's okay to be scared of the future, but remember, you still have today, this moment, to hold your baby tighter. You still have a choice to either allow your fear of the future take away from your joy of the present, OR you can choose to be present in the moment and still feel joy in the small blessings; even if it is intertwined with sorrow and fear. Joy, sorrow and fear can exist simultaneously. And they will. And that is your new norm. But let joy be the greatest of these.
Matthew 6:34 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.”