Category Archives: Cancer

Permanent

20150906-mandy-hornbuckle-tattoo-IMG_8646 I started designing my tattoo about a year and a half ago. I didn’t want to make this decision emotionally. Or in the middle of the darkest grief. I wanted to make sure I wanted it. I wanted to be rational. I wanted to be sure.

When I mentioned it once, a friend of a friend replied “A tattoo is just a permanent reminder of a temporary feeling.”

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And the thing is, with all due respect to her, because she had good intentions, she was dead wrong.

There is nothing temporary about this feeling. There is nothing temporary about being his sister. There is nothing temporary about his being my friend. There is nothing temporary about wanting to make him proud. There is nothing temporary about his being gone. There is nothing temporary about his being a part of me.

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And I went into the tattoo place on Friday, nervous but sure. I went into the tattoo place holding her handwriting. His name. A perfect combination.

He would have hated it. I know he would have. He probably would have called me a dolt.

But as much as I always wanted him to think I was cool, it’s not for him. It’s not for anybody but me.

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And for me, it’s perfect.

I don’t think it was worth it

I had a conversation tonight in which I was able to reflect on the past two years. The brother-with-cancer part. The loss part. The grief part. The horror part. But most of it was the part where God came through.

I have this story to tell now, a story where God came through despite the cancer and the loss and the grief and the horror. I wouldn’t have had this story otherwise. I wouldn’t have known this version of God otherwise. A version who inexplicably works all things together for good. All things. For good. Inexplicably.

I wouldn’t have gotten to know this version of my God if Shane had lived. I wouldn’t have had this story to tell if Shane had lived. And it’s an extraordinary story. An extraordinary God. I believe deeper now, am more sure now. Because Shane didn’t live.

But I don’t think it was worth it.

I’m seeing life turn out differently because he’s not here. I’m seeing good things happen despite Shane being gone. Every time I realize the good things that are falling into place are as a result of my brother’s death, I reasonably have mixed feelings.

I may or may not have made the career changes I made. I’m finding a deep fulfillment in this new job that I don’t think I could have ever found in the previous one. I’m being challenged and I’m growing and I’m learning and I feel alive.

But if it’s because Shane’s dead, it wasn’t worth it.

My sister-in-law wouldn’t have met Jeremiah, who makes her laugh and introduces her to new hobbies and loves my nephew fiercely and does all those things differently than Shane would have, but he’s the kind of person you feel thankful to know.

But I don’t think it was worth it.

I wouldn’t have thought to use my photography to serve others with cancer, and I wouldn’t have met some really wonderful people as a result.

But I don’t think it was worth it.

My mom wouldn’t be so diligent about taking her Betaseron shots, since she promised him right before he died that she wouldn’t miss any more. Maybe as a result, she’ll live many more years without her MS symptoms progressing. I’m really thankful that he had that stern talk with her right before he died.

But I don’t think it was worth it.

There are more, I’m sure. Stronger faith. Deeper relationships. Better perspective. But if I could change it all right now, I would choose Shane over any good God has done with these circumstances.

That’s the truth about God working all things together for good. I don’t think He expects us to think it’s worth it. I just think He works it together for good.

And that’s going to have to be good enough for now.

Unpathy

When I hear about people who have cancer who I don’t know personally – maybe a friend of a friend – I don’t feel much.

Maybe I should. Maybe I am not doing all that well with my word. Maybe someday I will? Maybe this is a phase, like the bad-sleep thing (and can somebody let me know when THAT phase will be over? IT DOES END, RIGHT?)

But I just… don’t feel much when I hear diagnosis news.

And I don’t think much, except one thought that consistently enters my head.

Either they will die, or they won’t.

Cancer treatments are improving. Tests for catching things earlier are improving. Awareness of the need to check for things are improving. And some people just get damn lucky.*

So I kind of assume people will end up okay. Because most people do these days, it seems.

Or they won’t. And they will die.

And for me, either way, I don’t have much to feel about it.

If they end up okay, it’s a wonderful outcome to which I cannot relate.

They don’t need me to get excited about it. They will feel enough of that on their own.

And if they die, I know all too well that there is absolutely nothing I can do to stifle the pain for whoever cared about them.

They don’t need me to be heartbroken over it. They will feel enough of it on their own.

*(Which is really what it comes down to. Luck. Dumb, dumb luck. Despite many ignorant (non-doctor!) people who think they have all the answers about how really to cure cancer. Chemicals this! Oils that! There’s a doctor in Germany that my cousin’s roommate knows who is developing a new chemo! Nutrition all the things! JUST HAVE ENOUGH FAITH AND CUT THE GLUTEN AND DAIRY!

I DO feel things during those conversations; believe me. And I get a little surprised about how often people tell me stuff like this, considering I don’t think anybody can claim that their natural cancer remedy brings people back from the dead. Hey guys? The ship has sailed for my family. Lecture somebody else about your witch doctor cures. Kthanks.)**

**I feel like I should end with something good and not so ALWAYS-DEPRESSING-MANDY, so I will tell you that Jack and I get to take Devin to Disney World this month and I am PEE MY PANTS EXCITED about that.

Let’s all think about that instead of cancer now.

(Well. Let’s think about Disney with Devin. Not me peeing my pants.)

I still wonder that

A year ago he was here. Except he wasn’t really.

A year ago I was there. Except I didn’t want to need to be.

A year ago they moved him down a few floors, to That Floor, where everybody who gets on the elevator with you or passes you in the hallway also has red eyes. And you’ve never seen or spoken to one another before in your lives but you immediately know one another intimately, without a word, as you pass in the hall.

A year ago I learned that they tape a flower to the patient’s door after they die. It seems like a sweet gesture but the first thing I thought was “oh, that’s how they let the nurses know when there is a dead body in the room.”

A year ago I watched him struggle and wondered how people do it for longer than the few weeks we did. A year ago we made morbid-but-fitting jokes to the slightly-horrified hospice nurse just a few minutes after his last breaths. A year ago we saw him for the last time as they wheeled his body away.

A year ago the nightmares started.

A year ago I wondered if it would ever be okay again before I am finally, mercifully home with him.

I still wonder that.

Brace

I’m starting to get spam comments on this blog because it has been so long since I have written.

I haven’t had a lot to say.

Life has been going on. There have been photo shoots and black belt testings and trips to see friends weariness and contentment and life. We committed to a church. We laughed over pizza. We had hard conversations.

Life has been going on.

Shane’s birthday has come and gone, and yesterday the year mark from that day he got back from Brazil came and went as well. On Monday the year mark from his diagnosis will come and go, and I know what came after that.

And I am bracing myself.

I already feel it sneaking into my thoughts. I feel myself reliving it even though logically I don’t make much of anniversaries and he’s not any more or less dead now because it’s been exactly 365 days since something.

It shouldn’t matter. June shouldn’t matter. July shouldn’t matter. It’s the same. He’s gone anyway.

But it’s there. Sneaking in. And I am bracing myself.

That makes me think of Shane in the ICU, bracing himself on a walker as he struggled down the hall, looking much older than his short 30 years. He had to walk! We said! He wouldn’t recover without walking!

It was a struggle but with Nurse Jen by his side and his walker in front, he braced himself.

And they held him up.

I have that too. I have that in friends and family and my Godsend of a sister-in-law. I have that in my little dog and my church family and oh how I have that in my Jesus.

I am not happy about feeling a need to brace myself for this month.

But I am so, so thankful in all the things God has given me to brace myself on.

Load More

I am coming to terms with the fact that scrapbooking is not something I am able to regularly make time for anymore. I will never be a Jenni Hufford, and that’s okay because she doesn’t make beautiful things to make others feel inadequate about not doing the same.

Instead, I use social media to document life. I download backups of Tweets and Facebook activity with grand intentions of someday making a book (although maybe Cassandra will make me one instead). Instagram has become my new digital scrapbook.

And so I look back at my scrapbook sometimes.

For a while it didn’t take long to get back to The Time When Everything Was Okay.

Now I have to hit the “Load More” button so many times, just to get back to that time before the sunset, when he was still around.

Load more.

Before the night I was rocking Devin to sleep, when there was no diagnosis. Everything could still be okay.

Load more.

Before he was smiling in his hospital bed, when he was going to be out in just a few days.

Load more.

Before he reunited with Cassandra and Devin at the airport, when his chest pain was probably anxiety and pleurisy.

Load more.

And before that, it was just life. Everything Is Okay life when we were separated by miles instead of time, when he would always ask me to stay longer when I visited.

Load more.

Load more. Load more. Load more.

He is moving further away every moment. Further than Colorado, further than Boston.

But the further I get from that sunset, the closer I get to my own sunset, to home, and to him.

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Keep loading more.

Still good

We went to a church service this morning that featured a guest band, The Moment, and the lead singer, Dave Bell, told his story about getting a rare eye cancer at 16 and living through it. He told the congregation all the ways his family had faith and all the ways God had been good to him, because He had performed miracles in their lives.

(His story starts at 6:50 on this video if you’d like to see it)

And it’s a lovely story, it really is. Encouraging, even. He tells it very nicely and it’s good to hear the way things work out for some people who have faith.

Some people who have faith, though, it just doesn’t work out for.

I know the intent behind this kind of storytelling is good. You don’t have to tell me that; I get it.

But the thing is, God didn’t choose to heal Shane that way. God didn’t choose to reveal his cancer to us in a low-numbered stage, and God didn’t choose to stop the cancer from spreading quickly. God didn’t choose to clean up the infection and God didn’t choose to make his liver start functioning again.

For whatever reason, God chose to take him Home.

And if you’re hearing these “yay miracles!” stories after hearing God’s unthinkable “no” to your prayers of healing, it can get a little frustrating.

Because God is still good.

God is still good even though he didn’t choose to heal Shane on Earth. God is still good even though a big part of life is terribly empty now. God is still good even though my nephew has only pictures to point to to identify his dad. God is still good even though my sister-in-law is suddenly raising a toddler without her husband. God is still good even though I can’t talk to my buddy every day anymore. God is still good even though nobody is using the golf simulator in the garage.

I’m sure it’s tempting to think that people who get “yeses” have more faith, or that God favors some prayers over others because He is unfair and unloving.

I don’t believe it for a second. My God is a God of healing, regardless of how He does it. My God is a good God. My God is a loving and just God.

So tell the world how God healed your cancer. Tell the world how God delivered you from your bad situation. Tell the world how God showed his love for you in many different ways.

But please don’t forget that the same faith that moved your mountain didn’t move somebody else’s.

And God is still good.

OneWord 365: Care

I have been mulling over my OneWord post for a little while now. The truth is, I knew what my word should be right away (I know when God talks to me because I usually don’t like what He’s saying), but I haven’t quite figured out what to say about it. I guess maybe I should just start writing.

This year, I chose the word Care.

For me, grieving has mostly been waves of pain and numbness, pain and numbness. There are other feelings in there, like sadness, contentment, anxiety and even joy, but I feel like “pain” describes the negative portions of the grief and “numbness” describes most of the rest of my time.

If you want the ugly truth, it’s hard to care about anybody else’s stuff when your stuff is always worse.

These last six months, “studying” the reactions of others who are grieving has taught me that comparing the good or bad situations in life is absolutely worthless, and will just lead to bitterness. I have yet to read a blog post or have a conversation with someone who is content with their life and also comparing it to someone else’s.

So, I try my best not to do that. But sometimes, when a friend is complaining about every little thing or things at work are in upheaval when they need not be, I look around at the drama others are creating and have to bite my tongue to keep from screaming the word “CANCER!”

How can they be complaining about this when their brother didn’t just die? How can they be worried about this when there are realities that are so much scarier?

So, I have to shut down a little. Stop comparing. Stop caring.

Which works for me. I can be apathetic. It keeps me from being angry. It keeps me from being bitter that my “bad” is so much worse than somebody else’s “bad.” And to be honest, caring takes energy I simply don’t have sometimes.

Except for the fact that “whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

The least of these are talking about their inconsequential ailments, or wasting my time with busywork projects, or vaguebooking, or always finding the negative in things. The least of these need a favor when I’m exhausted, and the least of these are just plain BUGGING ME.

So, this year I will focus on caring.

Break my heart for what breaks yours.

I will listen and empathize when I don’t feel like it.

I will care enough about people to put them above myself when I want to roll my eyes.

I will put effort into projects that I believe don’t deserve the energy.

I will do for the least of these what I would do in a second for the One who created a place for my brother.

Light the world on fire… or at least my block

Though life’s not quite always what it seems
You still need to paint the world with all your dreams

My buddy Jessica wrote a song a while back and every time it comes through the little speakers on my phone I get so happy. It’s called “Light the World on Fire” and it’s lovely in every way.

When my sister-in-law went to Mexico, she told me “my new goal is to do things that scare the s*** out of me.” And I thought, “yeah, that makes a lot of sense.”

Because that’s what I’ve been doing too. Not in the same ways she is, and I didn’t go into this with that goal, but losing Shane has made me many things.

Sad. Lost. Numb. Apathetic. Faith-filled. More sad. More lost. More numb.

But also braver.

Because the things that seemed so scary before don’t seem as scary now. Nothing can be as bad as July.

So I gave blood. It’s something a bunch of people do every day and don’t think anything of it, but it’s something that terrified me before (NEEDLES!), and now it doesn’t. I’m going to do it again even. It was that not-that-big-of-a-deal after all.

Giving blood

I got ridiculously dramatic bangs and I bought red lipstick and wore it in public once or twice, even.

I went to the doctor and scheduled a colonoscopy and upper GI endoscopy. More needles, I’m pretty sure, at least I hope there will be, because I think that’s how they sedate you and I’m gonna want to be OUT for that one.

And I started calling myself a photographer, which is even harder than the needles for me, I think. Because there are voices in my head telling me that I’m not good enough, and though I can point to the sources of those voices, there’s no point in dwelling on those people. Because I am in charge of my own confidence. And I’m in charge of my actions. And whether I do brave things.

For the monsters, they come out when it grows dark.

And Shane told me I was good enough over and over when he was alive, so if nothing else, I have his voice. His voice is better anyway. It took a lot to impress him.

I am a photographer who gives blood. And I’ll light the world on fire with that, to start with.

Or at least, my block.

The ugly thoughts in my head

For almost a decade, I have thrown myself into fundraising for the National Multiple Sclerosis Society on behalf of my mom. I’ve written blog posts and ridden countless miles in bike shorts, guilted friends into donating and done outrageous things co-workers dared me to in exchange for MS money. I’ve always cared about it very much. And I’ve always been pretty annoyed about this time of year, when the NFL players wear those heineous-shade-of-pink accessories because BREAST CANCER AWARENESS! BE AWARE! CANCER! BREASTS! AWARRREEENESSSSS!

I always thought cancer got too much attention.

(And honestly, I have never really understood how awareness helps all that much past a certain point, especially when it comes to the NFL wearing pink. I know. I’m probably going to get a comment about how it saves people’s lives and how DARE I say such a thing!)

And I get that. Getting checked for stuff saves peoples’ lives. They catch things in Stage 1 instead of Stage 4 and you get to watch your kids grow up after a few rounds of chemo and maybe a surgery or two.

But my brother didn’t get diagnosed in Stage 1. And my brother never missed a colonoscopy (his last one was only a year and a half before and it was totally clean). My brother didn’t have symptoms until two months before he died (and they even misdiagnosed those at first). My brother took good care of himself, cared about his family and friends, showed up for work on time, and paid his taxes.

There were no “he should haves” in his scenario. He did everything right. And that’s a relief.

Except when it’s not.

I figured that when he was diagnosed, cancer would be the next thing we threw ourselves into. And sure, there are certain events I would go to and I donated to the Cancer society on his behalf. Okay.

But to be honest? I don’t really feel like starting a Relay for Life team. Or going to cheer somebody on who is raising money for cancer with a marathon. Or even telling people our story so they will get their regular colonoscopies.

They can cure all the cancer they want right now, and it won’t bring Shane back.

I get all the good it would do for the world if I put a blue ribbon magnet on the back of my car for colon cancer awareness (AWARENESS!!!) and raised a ton of money to help them finally find a cure.

But I have no interest in doing good for the world right now. I probably will someday, but today I don’t want to.

It’s not going to change anything.