Feeling Scared

Welcome back! Thanks for coming back and reading another post. Writing these past two weeks has been very cathartic. I hope that someday more people will read these posts and other Dads will join in and share their stories, and their perspectives on things.

So last week we got a glimpse of what it was like on the infusion center floor. I gave a brief look at what it was like for Adeline to get her Chemo treatment. Her treatments were weekly up until a few weeks ago. I'm playing catch-up.

One thing I haven't talked about yet was how scary it all can be. Most men won't admit that they were scared. Heck, most men won't even act scared in a time of crisis. Why? Because that is what we are taught, it is in our genetics. We are taught from a very young age that we are the tough ones, we are the strong ones who have to be the rock and foundation for our families. We are taught that to be weak is not ok. (although if you've ever seen a man get sick lol then you know we are just big babies at heart)

All joking aside as men it is our job to be the tough ones, to stand firm when things get hard. It is our job to be the shoulder that our families cry on when they need it. It is our job to place our family's burdens on our shoulders and carry that weight.

BOOM! there it is, that's what a man should be able to do. Carry the weight of the world, his world, his family, on his shoulders. To be honest I've felt that weight. Again I want to make clear that at no point has Erika ever said Brandon, you aren't allowed to cry or Brandon you aren't allowed to feel and process any of this. Quite the opposite. Erika has been a loving and attentive wife and on numerous occasions held me as much as I hold her. (usually, hugs work that way)

So here we are carrying the weight of our world on our shoulders trying our best not to let it fall, not to let it bother us. But in reality, underneath all that built-up male bravado we are scared too. We won't admit it, we won't say anything more than, "it's ok we've got this". We won't admit that we are nervous about what is going on. If we do slip for even a second in front of others then they lose their strength as well. If you slip in front of your family and let on that for a moment you are scared or nervous then they sense it and it makes them even more scared or nervous.

Why is that you ask? Well because you are the rock, the strength of the family. When you, the champion of the house, the slayer of familial distress are scared or nervous then shouldn't the others be scared or nervous? It is instinctual to be nervous and scared if the people who are supposed to protect you are also nervous and scared. But when those people are strong it makes it a little less scary. So we as men shoulder that weight to make sure that those that we love feel protected and less scared.

Also to be clear, women are just as capable of shouldering this weight as men are. They often do in fact in the absence of fathers or husbands. Heck, I suppose even with fathers and husbands some women still manage to be the strength of the family. The funny thing is though, I may be tough and put on a brave face. But who is braver, the person that doesn't let anyone see them cry or the person willing to show their grief, anger, and fear? I would argue that it is probably the latter. I know that my wife gives me strength every day. She is my rock as much as I am hers. Watching her do the things that she does and pushing the way she is to reform childhood cancer funding is just amazing.

In the quiet moments of our lives that changes. For a brief minute while we are alone and have quiet that will change. We will allow ourselves to feel and acknowledge that fear. For some, that means crying. For others, that means punching a punching bag until a hole appears in it. We all handle these things differently. But in those quiet moments of our lives where no one else is around, we let it out.

This topic isn't an easy one to write about. No one and I mean no one enjoys admitting that they were scared.

So the first time you are at the infusion center floor, maybe the second depending on how busy they are, someone sits down with you and hands you this binder. This binder is like the compendium of all things cancer treatment-related. So they tell you to read through this binder, it has so much good information about things we should know or be aware of. While we are going through the binder the doctor is explaining to us about her ANC. They use some sort of calculation to come up with her ANC and that is her numbers. So when we say, oh her numbers were low, we mean her ANC was low.

The doctor tells us that at some point this number will hit Zero. So to put this in perspective her first ANC numbers, the very first time she went to chemo, were around 2500. What this means is, that this number getting to zero means she has no immune system. The lower this number is, the more susceptible to getting sick she is. They won't even give her the chemo treatment if she gets down below 750.

They talk about the blood transfusions and say that at some point she will likely need one. It is possible to never need one but she likely will. If I'm being honest that is the scariest sounding part. When you hear ANC numbers, it's scary. (Yup I'm admitting it) But when you hear that blood transfusions are on the table, that to me is just nerve-wracking.

Anyways, skip ahead a few weeks. She's had treatment a few times and things are going well. To be honest we are eternally grateful to God for how great things have gone because we know that it could be worse and it is worse for so many other people. So we get her labs done, which is a weekly thing or at least was until recently. Now it's a every time she gets treatment thing. So they get the labs done and suddenly the doctor comes in and tells us that her numbers are around 500. (Remember how I said they won't treat when they get that low, this is how we know.)

The doctor told us that they couldn't treat her because her numbers were just too low and that giving her the chemo treatment wouldn't be worthwhile. So they pushed the treatment off by 5 days to give her body more time to recover. Crazy that the thing that is killing the cancer is also tearing her apart inside.

When you first hear that they won't treat because her numbers are just too low you go into Oh No! mode. So fast forward a bit, they deaccess her port and we head home. We instantly go into reclusive mode. We can't sit on the main floor with everyone else this week at church. We already Microban everything each night on the main floor and everything on the second floor in the morning. We tell everyone that they cannot come over for at least a few days to give her more time to get those numbers back up.

Look, we don't know that it helps but it makes us feel better. She was able to get her treatment the next week. But truthfully the fear that we get when hearing how low those numbers are is so great. I think that's one of the worst parts about coming closer to God. I feel guilty for feeling that fear at all because I know God has a plan. I know that we are in God's hands but I still don't want my baby girl to get sick. I also know that God doesn't want us to feel guilty for that, I know that he just wants us to love and trust in him but knows we are humans and will make mistakes.

The next big scare was huge for us, probably small to some. We were at Children's again for another chemo treatment. This time we got the labs done and then the nurse comes back in stating they want more labs because it looks like she may need blood. So they order a whole litany of labs and everything seems to come back weird. Numbers were high that didn't make sense with how she was acting. She seemed just fine and energetic but the numbers didn't say that. So the doctor ordered another lab. This time she took the labs and then after she left our stall I took Erika and Adeline and placed my hands on them both and said a quick prayer.

We have made a habit of saying a prayer before every chemo session starts and I have even started including the other patients on the floor for that prayer. This is a big step for us, we weren't the people to pray except in times of distress and we sure weren't the pray in public kind of people. Now we were the church-going, God-loving, praying in public people, and boy oh boy does it feel good!

"God we come before you today to ask you to watch over Adeline. Her numbers are coming back and she may need blood Lord. Please take her in your healing hands and watch over her. We know that this may be needed Lord but we ask today that you keep her in your healing hands and that she won't need the additional blood Lord. In your name, we pray, Amen."

About 30-40 minutes later the labs came back in and the nurse brought us the news. "Well we aren't quite sure what was going on there but the labs came back normal this time so no blood needed."

People look at that and say, oh just a lab mixup. We look at it and say God has his hand in everything.

Regardless of how we handled the situation, the result was the same. The fear is so consuming. I am constantly afraid that she may get sick, and I am constantly afraid that things will start to get worse. As a Christian, I hand that fear to God. He is watching over us and what comes will come but he will always be there through it.

As a man, I loathe admitting how scared I actually am. I try to post facts this month about childhood cancer to raise awareness and just reading the facts is scary. It's scary to think that just because she is getting chemo she is more likely to develop breast cancer. Matter of fact here are a few fact bombs received from childhoodcancercause.org.

• Cancer in children and young adults is different from cancer that develops later in life. Some of the unwanted side effects of cancer treatments cause more harm to children than they do to adults. This is because children's bodies are still growing and developing, so cancer and its treatment are more likely to affect developing organs.

• More than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age; these health-related issues are side effects of either the cancer or more commonly, the result of its treatment. 1/3 rd. will suffer severe and chronic side effects; 1/3rd will suffer moderate to severe health problems, and 1/3rd will suffer slight to moderate side effects.

• Cognitive impairment affects up to one-third of childhood cancer survivors.

• A large follow-up study of pediatric cancer survivors found that almost 10% developed a second cancer (most commonly female breast, thyroid, and bone) over the 30-year period after the initial diagnosis.

• Female childhood cancer survivors who were treated with chemotherapy— even if they did not receive radiation treatments to their chest — are six times more likely than the general population to be diagnosed with breast cancer later in life. For those who did receive chest radiation, that chance increases exponentially and is on par with those who have the BRCA1 or BRCA2 mutations.

• Childhood cancer survivors are at a 15-fold increased risk of developing Congestive Heart Failure and are at 7-fold higher risk of premature death due to cardiac causes when compared with the general population. There is a strong dose-dependent relation between anthracycline chemotherapy exposure and CHF risk, and the risk is higher among those exposed to chest radiation.

• Children who were treated for bone cancer, brain tumors, and Hodgkin lymphoma, or who received radiation to their chest, abdomen, or pelvis, have the highest risk of serious late effects from their cancer treatment, including second cancers, joint replacement, hearing loss, and congestive heart failure.

• Life expectancy for five-year childhood cancer survivors has steadily increased. Life expectancy for those treated in the ’70s is only 48.5 years and survivors treated in the 80s have a life expectancy of 53.7 years, while those treated in the 90s rose to 57.1 years. The normal life expectancy for adults is 80.

• Nearly a quarter of childhood cancer survivors experience at least one debilitating neuromuscular condition 20 years post-diagnosis.

This stuff is scary. It scares me down to my core and I hate to admit it. But I'm starting to realize that it needs to be admitted. We as men need to admit that this stuff scares us. We can't ignore feeling afraid forever. I kind of feel like I'm in one of those meetings, "Hello my name is Brandon, I am a man, and I feel scared."

Men don't want to admit this kind of stuff. We don't want to admit that we are scared. We want to be strong. We want to be strong for ourselves, we want to be strong for our families, and we want to share that strength with the ones that need us the most. We are men and we are strong, we are men and we are the rocks of our families.

So why do we need to acknowledge it? Well, I am starting to realize that we need to acknowledge it so that we can move past it. We have to say it to ourselves so that we don't become overwhelmed by it. Not only that but admitting to ourselves may help us teach our kids that it is ok to be afraid, it is ok to be scared. We just need to acknowledge that fear and drive past it.

Thanks again for reading, until next week...