I will never, ever be the same mother I used to be. I am coming to terms with this, because I can't see this ever going away. Every virus, every leg ache, I will be wondering. Is it back? Has it found it's way back into her body? I can't get rid of it. I am hoping it will subside with time, the anxiety, but it will never be gone. Since I last posted, Brinley has had another ear infection. She is waking up with headaches at least 3 times a week. She has complained of ankles and hips. She woke up one night crying in pain because her legs were hurting. And instead of rubbing them and saying to David she must have growing pains like we did when Taylor would wake up with leg pain, I am sleeping with one eye open watching her fall back asleep, as if the cancer cells will glow in the dark and make themselves known to me. Instead of my first thought being "I wonder if she is having sinus issues", my mind immediately shouts "I wonder if she has relapsed in her spinal fluid." Sometimes I want to turn to that side of me and say "would you please shut up and let me handle this logically!"

So as not to lead you in the wrong direction, the logical side of me tells me the cancer is not back. And the logical side is the usual me. Things are great. Brinley is feeling "decent" considering she just had over two years of chemo. She plays all the time, is happy most of the time and enjoying feeling like a normal kid again. All the things she is dealing with are so very explainable. Her body needs some time to recover. Headaches can be from the ear infections. Leg pain from growing. An ankle can hurt if you bump it and bruise it for goodness sakes! I am a very logical girl, and can certainly explain these things away. We had her clinic visit today, and counts looked great. Her oncologist wants us to see if she can kick all this gunk that's hit her before we start looking into anything else, and I agree 100%. I am certainly not in there hysterically demanding her bone marrow be checked, my logical side has control most of the time.

However, I am not talking about the logical side. I'm talking about the side that says "you think this is over? Oh, you have no idea what is in store for you still. So stop all your celebrating and put on your helmets, because you are going to want to be prepared when the boulder hanging over your head is cut loose." And that side of me is afraid. That side of me puts a knot in my stomach for every ache and pain Brinley complains about. Sometimes I look at her and just worry. If her eyes don't look right. If she looks pale. I just keep it inside, because I know it isn't logical. Chances are good for this staying away. And so most of the time I pretend I don't think about it, because the great thing is nobody has to know what my insides look like. But I know I will never be the same. In five years, in ten years, if Brinley breaks a bone like people sometimes do, I will be right back in this place of worry. Is it back? I may not say it 10 times a day like I do now, but this isn't going away. I recently ran into a cancer mom I met 6 months ago whose son is doing well and in remission. We talked about how great it is to be done, how happy life is without chemo. And then she said, "Do you ever wonder, are we really done?" I knew immediately that she got it, something that will only be understood by cancer parents. She understood the fear that no matter how much we want it to be over, it will never really be over. The battle against cancer will continue forever in our minds. I wish it were different, but there it is. Cancer forever changes us.


susi and adam said...

I hope that fear subsides over time somewhat... My sister in law is fighting cancer still but it's not looking good for her. She is on hospice now. :( She has six kids and her oldest is 12. Cancer sucks. It really does. I pray that Brinley's fight is truly over!!! There will be more trials to come but hopefully with other things like boyfriends and stuff :) You guys are awesome!

Marie said...

It does get better...it never goes away, but it's not the first thought that races through your brain. The first year was the hardest. Every fever, every time she had a headache, I wanted to throw up.

We are now more than 3 years OT and it's not the first thing I think of when she says she's not feeling well. But it's still something that crosses my mind.

You are forever changed as a mother. That is true and always will be. Just as your daughter is forever changed, too. The cancer may be gone, but so is the innocence of childhood and that never comes back. That's not all bad, though. Marielle is very sweet, very empathetic, watches out for the "underdog" in the classroom, on the playground, befriends the new kids in school...all of that, I know, because she was once "different" and can relate to those kids.

Briana said...

oh, kristin, i feel you. i think often about how we are forever changed because of cancer. our lives are on a different track now then they were before. and i know that when elena is OT, i will be the exact same way as you. i already do it now with my other daughter. she has little bruises on her legs and i freak out to my husband that she must be getting leukemia, too. sometimes all the worrying and wondering feels like a heavy burden. it is really hard not to know what you can plan on or where life will take you or if it is really gone. i hate not knowing. i guess that's where we have to put trust in the savior. but it's really hard - something that i think i will be working on for a long time.

i hope that as time passes, it gets better for you guys and you don't have to worry as much. and we will be praying for brinley's cancer to stay away for good. you guys have come so far!

nsudburyfam said...

I know EXACTLY what you are saying. I can say that after being off treatment for 1+ years my logical side is slightly louder than my psychotic side, but only by a small percentage. Maybe it's 60-40 now and it used to be 40-60.

I think it will continue to get better, but it will always be in the back of our minds :(

It's another part of innocence that I feel has been stolen.

Amy said...

I love the analogy of the boulder hanging over our heads waiting to be cut loose...it's so true!
I don't think I will feel 'at ease' until we reach the 5 year mark...then and only then,I might not feel so much anxiety over every element. Our innocence of 'healthy' kids has been taken away from us and I don't know if I will every gain it back.
hang in there...'this too shall pass' and we are praying that Brinley can continue down the path of good health!

Unknown said...

As always, you are able to express beautifully exactly how I feel. I am sorry Brinley's having such a rough time of it lately.

Adria said...

Beautifully written. The analogy of the hanging boulder is a perfect one. There are times that it's dropping seems almost inevitable, so every glitch seems less a surprise and almost a confirmation of our fears.

I wonder too if it is going from the familiar to the unfamiliar. When OT life becomes our new normal, maybe those fears lessen.

It always makes me feel good to read what you write, because you have a gift for articulating my own fears and feelings.

I hope Brinley gets over the gunkiness soon.