I hear this phrase from my threenager often. Usually it’s shouted in a loud shrill “NO! I DON’T WANT TO!!” And that’s how I’ve been feeling for the last few days, friends. I just don’t want to.
When my alarm goes off at 6:00 am, I just don’t want to get out of bed.
When Teagan is being a threenager, I just don’t want to deal with her shenanigans.
When it’s cold outside, I just don’t want to take Ammo out.
I just don’t want to do the dishes.
I just don’t want to string up the feeding pumps again.
I just don’t want to sweep the floors, do laundry, or pick up baby toys.
I just don’t want to work out.
I don’t want to meal prep.
I don’t want to try and try and try to get Kenedi to eat or Kendal to crawl forward.
I don’t want to pack everyone up and go to follow up appointments for the twins.
I just don’t want to.
And there it is. The reason. We are approaching follow up appointments in the next few weeks for the girls and to say I am filled with anxiety would be an understatement. This will be the longest we’ve gone without a blood draw since ending chemo back in December and I’m silently terrified of what the appointments will bring. We used to always say in the hospital that we are cautiously optimistic regarding the treatment and the outcome. And that’s still true today. We are cautiously optimistic that the girls will continue to remain in remission. But that optimism doesn’t decrease the anxiety that I have, each and every day.
I’ve commented before that getting the initial cancer diagnosis is very different than waiting to hear if your child has relapsed. The initial diagnosis is a blindside. It’s often out of left field when you are smacked in the face with this new terrifying word. Cancer. Childhood Cancer. You know the world you are about to enter is awful, but you don’t know HOW awful it is just yet. The news is a shock to the system that takes you a while to adjust to, but after you adjust, you go into survival mode, and keep your head down while you help your little(s) conquer every obstacle encountered along the journey.
But now I know. I know the cancer world. I’ve seen what the drugs do, what havoc they’ve caused, the fights that have been fought. I’ve seen children in remission relapse without warning . I’ve seen happy outcomes and I’ve seen heartbreaking ones. I know the families of other cancer children at all stages of treatment. I know the hospital and staff by first name. I can change PICC dressings, drop NG tubes, keep my girls from aspirating on their vomit, sleep with the blow by oxygen on in the room, shut beeping pumps off when I’m half asleep, I’ve been through 7 anesthesia’s on both girls (14 combined), multiple EEGs and Echos, a CT scan, countless x-rays and labs. I know this cancer treatment world and I do not want to go back to it.
The twins get their blood drawn every so often to make sure they are still in remission. The few weeks, days especially, leading up to these appointments are excruciating. I can’t help but think “what if it’s back. What will we do.” The difference between the initial diagnosis and the check-ups is that at the check-ups you know the reality of this beast, and you wish you could just keep living in the beautiful land of oblivion. Of not knowing what’s there. The closer we get to the appointments the less I want to do. “Maybe if I just don’t get out of bed today, the day will go slower and next week won’t come.” Yeah, not true, Abby. I get out of bed because the appointments come anyway. There is fear. Always. But when you’re waiting to hear that the counts are great and the girls are doing well, the fear is significantly worse.
But here’s the thing that I’ve learned friends. We can’t keep living in fear. We can’t keep playing the “what if” game. We cannot keep playing the waiting game because while we are caught up in our fears and all this waiting and worrying, we miss out on living. The living game is what is important. Worrying about these check-ups is NOT going to change the result of them. I’ve learned that you have to roll with the punches, and while you’re in between punches, enjoy every minute. Be PRESENT in every moment you can be. Keep hope alive. This childhood cancer has already stolen so much from me, Aaron, my girls and our families; I make a conscious effort to not let it steal anything else. Anymore time. There are times when I have my moments, or my days, but I dust myself off and move on. I face that anxiety and tell it there’s no room for it here. Because the truth is, we just don’t know what’s going to happen, and I would be a fool to waste my time wondering and worrying about what could happen and miss what IS happening right in front of me.
Each day I get to get up and enjoy my girls. I get to see them grow and learn new things. That’s what I need to concentrate on. Because I just don’t want to miss out on this life of ours. This beautifully complicated wonderful life that we have. I just don’t want to. **(please see note)**
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*I do currently see a counselor every now and then to help me work through the anxiety. PTSD in cancer families is a real thing. If you are feeling overwhelmed, stressed, anxious all the time, I urge you to speak with someone. Find a support system. You are not alone!*