Keeping love alive

I watched a Ted talk recently which talked about how the human being can be happy no matter what situation they’re in. Meaning that all of us imagine that if something bad happens to us we won’t be happy but when actually analyzed, people who’ve had terrible things happen to them still manage to remain happy. In fact, they are statistically as happy as someone you would imagine has a very happy life – for example a rich and famous celebrity.

Happiness can be created from within regardless of the situation your body is experiencing on the outside.

Of course it depresses me that I can’t enjoy a single vacation or an hour of my day without constantly being reminded that my husband has a brain tumor and we don’t know what’s going to happen.

Sometimes when I come home from a long day of work, it’s tough to deal with him who has been home all day because he can’t go outside everyday and work. Maybe that will change but for now this is our lives.

We are constantly reminded that we are not like everybody else. We plan doctors appointments, medicine schedules, sleep schedules, alternative treatments. It can get really difficult.

But here’s what you CAN do. Try to make the most of the REST of your day. The part that doesn’t include meds or doctors appointments.

Order in Chinese on a weeknight and catch a great stand up show. Try to cook or play a game together. Have friends over often. Decorate. Do what makes you happy. Remember the stuff you used to do before the tumor took over your lives.

Live a normal and happy life to the best of your ability despite the crazy shit that life throws at you. We try everyday.

The roles we play

As a young wife of a young husband with a vengeful tumor inside his brain, I often mind myself trying to figure out the role I play to R. I read a lot on Google on wives to husbands with seizures, and the majority of them say the #1 thing that changes is they start playing the role of a mother.

As someone who got married to her soul mate at 22, and proceeded to witness 9 seizures in the next year and 4 months, this is my take on this.

You will play the role of a mother, more often than other wives. Of course you will. Your husband is having seizures for God’s sake. You will have to be around, help him get back to his senses when it’s over and soothe him, calm him, often massage his headaches after he’s had a big one. I’m not going to lie – it is difficult and it can be tough. But why should you let that stop you from playing all the other roles that you can?

Play the role of the mother during seizure time. Play the role of the best friend when he needs someone to talk to. Play the role of the kid when you want to complain or rant and let him take the reigns. Play the role of the father when you are making big decisions. Don’t let yourself turn into one version of you. Keep evolving and changing as situations develop.

But most importantly, play the role of the wife. The wife is a combination of the lover, mother, father, child, best friend. Its the most fulfilling role we play in this world and you are given a challenge to do the best that you can with it.

So be a wife. Be everything you are feeling but accept the fact that you will have to take over sometimes. Don’t let it get you down, instead, let it give you strength. Its up to you to create a happy marriage and allow your home to be a peaceful, happy place as much as possible.

This is your role, accept it with a strong mind and big open arms. You can do this.

Can you ever get used to seizures?

Did you? Can you teach me how?

R had another grand Mal seizure today. The last one was barely five weeks ago. This is frequent for us. And it’s really getting to me.

Firstly I am tired of saying the words that I don’t even believe anymore : it’ll be okay. It’s all about the right meds. Once we’re on the right dosage it won’t even happen again. Now that you’ve had this one you’re all good.

I usually force a half hearted smile after it’s over because to R, his whole mind and body just went through an earthquake. And I can’t really say ‘it’s hard for me because I have to watch you have one’. I’ve actually said this many times, but right after a seizure is not something even super sensitive me would go for.

But it’s getting harder for sure. I barely leave the same room he’s in just in case. And living your life for the ‘just in case’ really sucks. It sucks more for him because keeping faith is so hard when life keeps punching you in the gut, it almost feels like it’s exacting some sort of terrible and cruel revenge.

I don’t want to see one ever again. I said the same words last week. It’s a nightmare and it’s been too long for two married kids in their early twenties.

Is anyone listening? Up there or next to me or down below? Can we catch a break? Because it’s getting sad and heavy, and you can feel the bitterness in the air of the house we are so desperately trying to keep a home.

Stress

I’m going to touch upon a topic that every caregiver and person with any kind of tumor is going to feel a lot of. Stress.

It’s unbelievable, sometimes I’m surprised at how much my own mind can take. The stress of a full time hectic job, the stress of an upcoming MRI, the stress of having in laws over soon, the stress of next steps. More sessions of cytotron? Or chemo? Or immunotherapy?

Are the alternative treatments we are doing working?

Today was a bad day. I woke up in a bad mood, I picked a fight with whoever talked to me, I came home super stressed out. I changed the bed sheets in a huff and a puff because they weren’t clean anymore and I was complaining about how I need my bedsheets to be clean. Then I decided to cook dinner and while I was cooking, my cat decided to take an old bone and eat it on the newly changed bed sheet. I lost my shit.

I blamed poor R for not seeing him, I blamed the cats for being cats, I blamed myself for leaving bones out.

But honestly it’s just the stress and I know it is. When you’re a caregiver and you’re young, and you still don’t know how to handle your emotions or the constant hurdles life throws at you, you will be stressed.

And you have to stop and breathe at some point. You need to step out of your stressful caregiver shoes and take a good hard look at yourself and the person you are becoming.

And sometimes you have to tell yourself. ‘hey you’re being shitty. Stop it.’

Then you just have to stop being shitty because like the old phrase goes, tomorrow is another day.

Take another shot at being better.

It’s fucking hard sometimes.

Bad news 

One of the many perks of having a brain tumor and married to a dude with a brain tumor (can you sense the sarcasm?) is you’ll probably get a lot of bad news throughout your already difficult journey. Today we received the news that the biopsy done on the old tumor shows the tumor has not only progressed to a grade 2 but very likely to move to a grade 3 as the growth is fast and aggressive.

I got the call at work. Sometimes it makes me so mad.. I assume others get calls from home like ‘honey I’ll be late from work so maybe I can’t pick up the milk today’ and not so much of ‘honey it’s a grade 2 maybe 3 come home so we can review our various toxic and limited treatment options.’

It makes me look around at all the happy people and just feel so sad. Obviously I know that happy people have miserable moments, and the truth is I like to think of myself as a happy person in am unhappy situation. But what do you do when there’s no answer?

What do you do when no matter how hard you try to stay positive, life keeps kicking you in the metaphorical nuts and saying ‘ha! And there you thought you might actually have a shot!’

My answer? You cry. You cry and you weep till it feels a little better.

And then you pick yourself up and keep moving because the world will not stop because life is hard to you.

It will go on, and you will have to too. 

Work life balance 

One of the many sad parts about having a husband with a tumor, is balancing work and a full time job. Today was one of the harder days.

Here’s what the world doesn’t understand : UM HELLO MY HUSBAND HAS A BRAIN TUMOR AND THAT MEANS SOMETIMES I WILL NOT BE ABLE TO COME IN TO THE OFFICE. Not everyone will understand, and you will be left feeling guilty on both ends. Guilty you’re not spending enough time with your husband and guilty you’re not spending enough time at work.

If you’re really lucky like me, your boss might even tell you your performance has dropped the day your husband is getting an MRI – an MRI which you did not go to the hospital for because you didn’t want to get even more shit at work. 

I wish I had an answer or a solution on how to balance this because truth is, nobody understands. Nobody will understand and even though they say what they think is the right thing (I’m so supportive! I totally understand! Hang in there!) there is a good chance you will have to fight this fight alone.

If you are in my place.. What can I say? Welcome to the club. It can get lonely sometimes. 

Seizures and how they crush your soul

I want to take a minute and talk about seizures. If there’s anyone here who has witnessed one, you know how terrifying it can be. In those seconds or minutes, you feel utterly helpless and alone, it’s almost like watching someone die only scarier (except its not actually scarier, because they usually come out of it very soon and are back to normal in a while).

I have seen it happen to R around 6 times. Once before he was diagnosed (cue a 19 year old me me rushing him to the hospital and finding the wretched tumor) and a bunch in the last year we have been married.

The latest one was yesterday. The sad part is I have almost gotten used to it. Used to having my husband look at me with a flicker of fear in his eyes I cannot explain, and suddenly I know its happening and I need to jump up and rush to his aid.

The happy (lets not push it) part is that with experience, I am now better at dealing with seizures (wow one more thing to add to my resume. Makes great garlic bread AND knows how to deal with seizures? Instantly hired.) But it’s true – experience with watching something traumatising and  soul crushing makes it hurt less the next time, and the next. It could just be numbness and constantly expecting the worst, but I’m trying to be optimistic here.

Another piece of happy news for those who experience/ know people/ are married to people who have seizures. Please speak to your doctor and try to get your hands on a spray called Midaspray. It’s a nasal spray that stops a seizure instantly, it’s magic.

But the saddest part? Trying to stay positive while navigating through a cocktail of medicines, trying to find the right brand and dosage so that R can do something as simple as go downstairs to pick up a packet of milk without fighting with his inner demons and fear of falling/ hitting your head/ everything dangerous. The saddest thing is smiling tiredly and telling him that this is it, this is the right drug, the right dosage, it’s not going to happen again, you’re okay, you’ll be okay.

Because I don’t know but I want it so bad. I’ll keep saying it to him and to myself until it’s finally true. You’re okay, you’ll be okay.