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| You see that boy? You see that SMILE. That is one third of my heart walking around on this earth. I love him so very much. He is the strongest little boy. He is my hero. |
I'm on a HUUUGE roller coaster of emotions right now.
This is big guys. This is his 5 year cancer scans. LAST SCANS.
The LAST TIME I will get to 'peek' into his body to see what the cancer is doing (ok so only the doctors know what they are seeing and really THEY peek in and tell ME what's going on) But still, it's my last 'window' to what his cancer is doing. And it scares me. It scares me a LOT. However, I'm also SUPER SUPER THRILLED that this is his LAST set of scans. The last time he will have to get an IV, get that yucky radioactive isotope injection in his IV, and the last time he will be put into a CT machine, and the last time he'll be sandwiched for 45min in the MIBG machine.
I'm SO HAPPY and so scared.
I'm falling apart here emotionally guys. Seriously. Stupid brain keeps replaying all the scary stuff my boy went through. Out of no where I will have like this awful vision of the cancer coming back and we're back at square one and it scares the holy shit out of me. I start to hyperventilate and I have to talk myself down from it. CALM DOWN Woman, just CALM DOWN, you are getting yourself worked up and that's not good.
I thought I had been handling everything so good! The past two years I've been mellow, calm, cool, collected, sentimental even about his cancer journey. I was "eh, it wasn't THAT bad...I handled everything ok..."
Apparently, it was all a lie. A brain game, on me.
Emotions catching up with me. I feel like I'm about ready to jump out of my own skin, and that is so so so not like me at all. But I'm absolutely terrified for those scans next week.
I'm excited to see the Oncology nurses and doctors again, it's been a year since we saw them last. (well other than 2min when my daughter and I popped into the Oncology unit back in December when she had her heart check up at the same hospital).
My son (Circus Son #2) has grown so much since then. He's such a normal BOY. So amazing. Blowing me away with his awesomeness every day. He's come so far since that day almost 6 years ago. He was 3 months old at diagnosis. I will NEVER forget that day, always etched in my mind. It comes flashing back to me, so does the day when he was 6 months old and we were told the cancer was spreading and he needed surgery and chemo, all within a week.
That all comes flooding back to me, and I can't breathe.
Then I think, "OMG....is it going to happen again? What will they see? What has the cancer been 'doing' for the past year?" My heart suddenly stops beating and it's both in my throat and in my toes all at the same time, and my world spins.
I read every day about kids fighting Neuroblastoma. Kids so close to 5 years NED, and BAM, blindsided by relapse. I cry and I cry and I cry. I find myself distancing myself here and there from some of the childhood cancer community, because I'm scared. I don't want to read these stories anymore, I can't. It hurts so much and scares me so bad. I don't want that to be my baby. I don't want it to be ANYONES baby. So then I just cry and cry and cry some more.
I worry. I cry. I pray, I start all over again. I catch my breath. I breathe, I yell, I get all anxious and then cry some more.
I never wanted this. I never wanted my son to have cancer, no one does. I certainly never wanted to feel like this as a mom, this terrified for my child.
He's almost 6 years old now. He was 6 months when he started chemo. He doesn't remember ANYTHING that he went through, but I do. I close my eyes and I see it clearly. If he had to go through all of that again...I can't even BEAR to think about it, I just can't. I cannot imagine my head strong STUBBORN little boy going through any of that, again. He barely tolerated it the first time around! Cancer toyed with our family so much, and I don't want that to happen again. It's just toying with ME right now, with my emotions. I hate it.
So I had to apologize to my kids tonight for Mommy's grouchiness. I wasn't cross with them, and didn't mean to come off as impatient.
I have had anxiety attacks off and on my whole life, but this past several weeks has been dang near unbearable. I'm literally on an emotional roller coaster and I want off! I can't do this up and down thing much longer.
I feel like an idiot, because it's been almost five years now. I shouldn't STILL be this emotional over it all. I mean, compared to so many kids my son had it 'easy'. (HELL NO nothing he went through was easy by any means, but TRUST ME when I say that SO MANY KIDS HAD IT SO MUCH MUCH WORSE).
Seriously the last two years I've been all calm cool collected and not bothered at all. I would recognize the important cancer dates in my sons life. His diagnosis date, July 31st., the date we found out the cancer was spreading and he needed surgery and chemo, Oct. 22nd (which was also my husband and I's third wedding anniversary), and the day he HAD that surgery was Oct. 30th (spent his first Halloween unconscious in the ICU at the children's hospital after surgery).
Nov. 9th my son started his first cycle of chemo, he was barely 6 months old.
Jan. 21st marked his 4th cycle of chemo.
By Feb. 23rd he was off of treatment.
By that August he was marked as NED.
Then year after year we inched towards that date. 5 years.
Those 5 year cancer scans. At the time they were like the Olympic gold medal hanging at the end of the finish line. Just waiting for my son to reach out and GRAB THEM and make them his! After all, he's earned them that's for sure. He's got the scars to prove it.
Now?
They are looming.
Like a guillotine. Just waiting.
The anticipation is suffocating.
I haven't felt this way in several years. Five to be exact.
I've forgotten how awful it feels.
How could I forget that feeling?
HOW?!
It's exhausting.
I can't sleep, I don't want to eat, I'm snappy with everyone, I cry at the drop of a hat. Suddenly finding myself unable to breathe at the most odd times, because something makes me think back to five years ago and I just...I just can't. It still hurts.
You don't realize how much it hurts you to see your child go through all of that until you experience it. It's awful. I felt so helpless so useless. I couldn't do ANYTHING for my son. I couldn't just FIX IT for him. As a mom you see your child, your BABY hurting and you do whatever you can to make it right for them, to fix it. I couldn't do that for him, I couldn't go inside his body and fight the cancer for him. TRUST ME I would have, if I could.
He had to do that on his own (with the help of the chemo and God and amazing doctors).
So many times I couldn't even HOLD my son because of surgeries or he was just so angry he didn't WANT me to hold him.
I remember all the times I helped hold him down for blood work, and pokes and scans. The screams he made...he was just a baby. He would look at me...with those eyes...oh his big brown eyes. He didn't need to talk. His eyes did it. I just looked into those BIG BROWN EYES and they just said
"Why?"
Why Mommy? Why aren't you saving me? Why are you letting these mean people hurt me? Why are you helping them? WHY does it hurt, WHY are you doing nothing? Don't you love me?
I would sob and sob and sob. I was told I could leave the room when they did these things, but I couldn't leave him, I COULDN'T and I WOULDN'T. I stayed with him every step of the way, even stayed with him as long as I could before they'd take him back to surgeries and I would sob and sob when they took him out of my arms....
It was so hard to look him in the eyes. But I did my best to portray how much I loved him, and how much it was hurting me to see him go through all of this.
Sometimes I questioned whether staying in the rooms was my way of punishing myself for my son having cancer. Stupid I know. But you'd be surprised by how many times I was asked "what did you to cause your sons cancer?" (Like I drank a magic potion or said a spell or did something evil and horrible to cause my son to have cancer).
So I guess I just tortured myself in the long run, because I knew I couldn't fix it for him. I couldn't make it go away.
When your baby is hungry, you can feed them.
When your baby is cold, you can warm them.
When your baby is hot, you can cool them.
When your baby needs a clean diaper, you change them.
When they are sleepy, you can rock them to sleep.
When they have cancer....there isn't anything YOU can do (well, praying, and praying is a HUGE HUGE thing you can and should do for them, at least that's how my family anyway).
Just the fear of relapse has ALWAYS BEEN THERE.
It is my biggest fear, hands down.
I literally lose sleep over the idea.
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| These children literally put the color in my world. That is my heart. Every. Single. Bit of it. Walking around outside of my body. That's a scary world out there. It's scary watching bits of your heart walking around, vulnerable to all of the scary stuff in the world, not to mention the scary things like cancer that can be hiding in their tiny little bodies. |
This is the first time I've actually talked about how I've been feeling. Other than "Oh yeh, we're nervous for his scans coming up, but we always are" That's about the extent of it.
If only you (who do not have a child who has gone through cancer) knew how I felt on the inside. However, I pray you all never have to know that feeling! I don't want you to know, but at the same time I do want you to know, so that's why I'm telling you.
Hopefully talking about it makes me a little less anxious. I can hope.
While my brain knows I'm not the only mom feeling like this, I wish my brain would tell my heart that, because right now...my heart feels so scared and alone just thinking about all of the what if's, and what we've already been through, and praying to God we don't have to go through it again. Praying for the families who ARE going through it again, because damn it, once was bad enough, and no one should even have to experience it ONCE let alone TWICE. So then I feel so guilty for not wanting it to be my son SO BADLY, but then I don't want it to be ANYONE ELSES child either!!
I read another blog tonight and I wish I had saved the link so I could share it here, but at the time it was too much for me to even handle. I should have KNOWN better than to click the link, but I did it anyway.
Twins. Twin sons. One fought a battle with cancer, and died. The twin....also diagnosed with cancer, and still fighting.
I lost it. Cried and sobbed like I haven't cried in a long long time. That did not help my anxiety any.
That has been a HUGE HUGE HUGE fear of mine.
Do you know when Circus Son #2 was diagnosed with cancer they NEVER ran a single test on his twin brother. Not. A. Single. One. JUST to make sure he didn't also have cancer.
Do you know how many TWINS have cancer? How many twins have ONE twin fighting cancer? How many twins will lose a SIBLING to cancer? Do you have ANY idea how terrifying that is? Losing one child would be the end of the world to begin with, but losing TWO children to the monster of cancer....I literally wouldn't be able to handle it, at all. I couldn't.
So those are the MADDENING thoughts that I get to deal with on a sorta fairly regular basis.
"oh but worrying about it fixes nothing" Yeh, ok well, right you are....but put yourself in my shoes and then tell me how easy it is to talk like that, ok? I bet you would be wanting to claw the eye balls out of the next person that made that comment to YOU.
As a parent, you WORRY about your kids all the time! But it's usually not about cancer.
It's usually bed times, school grades, boo boo's, the sniffles, maybe getting their tonsils out, a high fever, making friends, getting into trouble..etc etc. And yes, those are all very valid fears, and worries.
However, so is worrying about your child's future...and his cancer.
You worry. You pray, you hope for the best.
Cross your fingers, eyes and toes....whatever it takes.
Just praying for NO GLOW and a full official 5 years of No Evidence of Disease.
Feb. 18th and 20th are both coming too quickly, and yet going at a snails pace.
Please nerves calm down before the day gets here!! I do have to live life during this time ya know! I don't have time for anxiety attacks and cry sessions. I have first grade math (common core, whoop whoop) to deal with.
Making Valentines boxes for the kids parties, filling out V Day cards (where did I put the name lists again for each of the kids classes???)
My work schedule.
Remembering that tomorrow is PJ day for my daughters class, remembering she has a Girl Scout V Day party this week (and we need to get those cards made for that). Not to mention Girl Scout cookies come in Friday, and then we have a cookie booth coming up. Girl Scout Thinking Day is the day after my sons LAST ever cancer scan.
Breathe.
Breathe in, breathe out.
You got this mom.
You got it.
Your kids got this.
GOD has this. He has all of us. He's got our back. No matter WHAT.
Mom Circus
