Maintenance Day 342: Rough Road

It’s been two months since I’ve given an update on Scarlett and our family. I often think about doing it, I’ve started many posts, written a lot of words, but haven’t shared anything.

Scarlett has been doing extraordinarily well. She is happy and energetic. She laughs and plays all day. She is a princess, for sure – good and bad. The past two months have seen medication increases due to her growth and treatment response. Her counts have been nearly perfect. Her feet seem to be improving slightly. She still complains about the itching, but hasn’t slept with an ice pack in some time. That improvement is likely due to an oral anti-fungal that she has been taking. Unfortunately, it may be causing some liver damage which we will be monitoring every two weeks.

Scarlett is enjoying gymnastics very much. She is looking forward to starting a dance class soon. Scarlett is very brave in most regards – when we tell her to be. We are finding that she lacks confidence in other situations. Gymnastics, for example, is really testing her. She gets in her mind that she can’t do something and easily gives up. A few weeks ago, she was encouraged to walk across a balance beam that was placed over a foam pit. She stood at one end and said “I can’t! I can’t!” It took a lot of encouragement, a couple falls, and mom walking backwards in front of her for her to do it but gosh darn it! I wasn’t letting her give up. She is the bravest little girl I know and I’m not going to watch that disappear now. I will spend every day reminding her of how brave and wonderful she is.

I, on the other hand, am struggling to deal with my emotions. I think back to last year, when Scarlett was in the midst of her frequent and violent temper tantrums. If I were three, I think I would be right there with her. Over the past ten months, as life has calmed down a little bit, appointments have become less frequent and it has allowed us more time to finally think, process and try to comprehend this situation. I have been having panic attacks, flashbacks and moments of anger. Why us? Why our daughter? We have been through enough already! Just give us a damn break!

In February of 2015, I wrote an update about how much has changed in the six months since Scarlett was diagnosed. One year later, as I read that, I wondered what happened to that strong person that I once was. As another year has passed, I again find myself to be a different person. One that I don’t like quite so much.

I’m sure that many cancer parents suffer from depression. I will admit that there have been points in my life that I have. I know what the worst feels like. Which allows me to know that I am not depressed today. Instead I suffer from anger, frustration, sadness and a loss of hope. But I’m still happy.

I’m happy that all three of my children are thriving. Tate is starting to finally enjoy school. He is learning to read. I love lying in bed with him at night and listening to him read to me. I love reading to him. He is still that same sweet gentle soul. Evangeline is so snugly one minute and then making me laugh the next. She has the best sense of humor but really knows when I need a hug. Scarlett is her little diva self. Always wearing a skirt, always wanting a pretty in her hair, always making sure she looks her best.

Many people, while listening to me express my frustration, will say “but at least you have Scarlett”. While that is definitely true, and we are so happy to have every day with our brave girl, it seems to diminish the other feelings that we have. It makes me feel guilty and selfish for feeling anything but grateful. Like we don’t deserve to feel anything but happiness.

The maintenance phase of treatment is so much less hectic than any other phase. In the best case, we go in once a month for treatment, do five days of steroids and the rest of the time is “normal”. It’s great! But all that down time really allows you to think.

I have found that the memories of Scarlett’s diagnosis have not faded one bit. While talking to my sister one night, a memory hit me hard – just a partial picture seared into my mind. Scarlett wasn’t even part of it. Just a chair. I hadn’t thought of that chair in probably close to the year and a half since I was there but there it was, clear as day. It caught my breath and made my stomach turn. Amazing how one little chair can scare me into a panic. I questioned one year ago whether those memories would ever fade and I can definitively say that, one year later, they are probably worse. I have more time to remember them now.

The panic attacks are coming more frequently. Every time I hear of a new diagnosis, it brings me back to Scarlett’s. There are moments that I remember like a movie in my head. I can close my eyes and see them playing over and over, sometimes with no sound, sometimes just a few seconds. And there are moments that I can’t remember at all. Part of me hates them. They make me sweat, heart pound, catch my breath and make me stop to hold something. Part of me doesn’t want them to end. They are moments that, for some reason, I don’t want to forget.

One year ago yesterday, we found three dark red sores in Scarlett’s mouth. We were so casual and flippant about them. “We will just ask at her appointment in a couple days”. A couple days later, doctors were rushing her to PICU and talking about removing parts of her tongue, if she survived. I would say that, including the day of her diagnosis, these next two weeks are an every day reminder of the worst days of her illness. Those were the days that we were most afraid and the closest to losing her. I can only imagine what memories will emerge in the next two weeks.

I have started therapy now. Unfortunately, finding a therapist that has dealt with a childhood cancer parent in this area is impossible. I’m hoping that as I get more comfortable talking to someone about my feelings, I won’t “forget” these moments but just learn to respond to them differently.

After a year and half of being a cancer family we find ourselves on both ends of a spectrum. Most of the time we are joyous and ecstatic that we have a healthy Scarlett. We are grateful to be where we are and hopeful that this positive route will continue. 99% of our days are happy and laughing and busy. But during that small 1% we are angry and disappointed. Why us? Why is this storm cloud of crap raining down on us all the time? What are we doing wrong? We try to do the “right” thing and never seem to be rewarded. It’s a difficult position to be in – never wanting to complain so as not to sound ungrateful but allowing ourselves to be honest and open with our feelings. We can’t control how we feel. I certainly hope that someone will help me process my thoughts and feelings. Some day, I may need to do the same for Scarlett.

It’s a lonely road to travel. One that few people truly understand. We have our family and friends that are always willing to listen but, when we express our true emotions, there is nothing to be said. We understand. We don’t know what to say either. All we ask is that you allow us to be honest and open. If we share our anger or disappointment, don’t judge. We are more than aware of our blessings. We just have an acute awareness of our struggles at this time. Hopefully this anger will pass. Hopefully we can come to a point in which we can see that there is a light of blessing in our shadow of suffering. Hopefully our 1% of darkness every day will grow less and less. We hope and pray for that every day.