Wednesday, March 16, 2016

friday night meningitis-y fever

I never forget that Phil has cancer.

But sometimes I pretend he doesn't. I like to pretend that I have all the time and energy in the world to drive a carpool or volunteer at my kids' school or plan a trip. Pretend there's no possibility that I'll have to scramble to find coverage at work and for the kids at the last minute. Pretend that Phil won't have to be rushed to the ER, put in isolation, and end up on antiviral meds and morphine through a picc line. Pretend that the month he has to take off from work to recover is really a vacation.

Pretend that our life is normal.

But occasionally circumstances pop up in my face to remind me that our "normal"... isn't.

Last month, Phil came home from work on a Friday with a headache and fever, and by Saturday night he had been admitted to the hospital with Shingles and Meningitis, probably a result of the chemotherapy he currently takes. He was in a ton of pain. I know this is true, not because he was complaining (he never does) but because he asked me to take him to the hospital which just never happens. He ended up hospitalized for a week and just went back to work this week.

We live our lives in a way that probably looks typical... school, work, church, soccer, doing housework and homework, getting together with friends, exercising... but most moments of most days I am braced for chaos. I evaluate Phil's headaches and heartburn with the same scrutiny as his quarterly blood work. I sort medications into one of the biggest pill boxes I've ever seen. I carefully craft soft words into gentle sentences to explain to our tender-hearted kids why their dad is in the hospital again, and when he will be home, and why he has to go there so much.

(The reality is, he doesn't go there "so much", but they are observant enough to know that most of their friends have parents that have to go to the hospital exactly NEVER, so the few times they remember are just a few times too many for their comfort. But still I do my best to comfort.)

My whole life revolves around making sure everyone stays out of the hospital, and when that becomes unavoidable I do everything I can to make sure we all survive with as little trauma as possible. I still pack the lunches and get the kids to school. I still read to them and sing silly songs in the car. I still make sure we have clean clothes and clean dishes. I still get up with kids when they have a tummy ache or a nightmare. I control the things I can when chaos erupts. It's how I survive.

Phil and I don't feel sorry for ourselves. We realize we don't have any other option than to push forward and keep living our lives. But sometimes we look at each other, shake our heads and say, "Damn. How much more do we have to endure?" Then we laugh. Because that's also how we survive.

And then we continue with the parenting and the working and the living. And I continue with the caregiving. I do it because I have to. But also because I want to. I feel responsible for making decisions about Phil's health and advocating for him when he's unable to. (That's marriage.) I feel responsible for making sure our kids know they are loved and safe. (That's parenthood.) And I feel responsible for making sure I don't go off the rails once the dust settles. (That's good sense.)

Here's hoping we have another good, long run of health and hospital-free living. Hoping the same for all of you. 



Emily said...

I'm right there with you. Every word.

Matt said...

Well said Cassie. You and Phil are doing a great job, and your words ring true for me and my wife. I'm the patient and she's the caregiver. Unexpected challenges seem to happen and we work through them. My best to Phil and you.

Patricia Fragner Imsande said...

Whatever "normal" is, you guys are doing a great job��. I always learn from your posts.

Unknown said...

Cassie & Phil:

We feel your pain. These little setbacks seem to be part of the territory, but it makes you appreciate the good times even more!

Hugs and prayers!

Linda said...

Woah, this sure came as a shock! So very thankful this is all in the rearview mirror now, and you are back to a more "normal" life again. You beautifully expressed the reality of life with MM, with all of its frustrations and the many roles you must play in the day to day. Praying for Phil's complete recovery as he regains his strength and stamina, and a very long "hospital free" time for the Brabbs family!❤️

Big EZ said...

Your words well capture our new normal as we all carry our own personal MM "Jack in the Box". We negotiate our lives, listening to that redundant little happy tune, knowing that Jack will again pop out, shocking us to the core and consuming our focus as we do our best to stuff him back into his box.
Oh for those days when we didn't have to turn the crank.
Keep up the good fight and thank you for sharing.

Terri Michigan said...

I have been following along on & off for years on your MM journey. Glad to hear he is out of the hospital & you all are still hanging in there. Cancer sucks!!! But, I am grateful for people like you, like my husband who so graciously always stands beside me in this journey & makes sure life is as good as it can be. Our caregivers are angels to us all even though I do feel guilty that he has had to deal with this disease in so many ways. Grrr such is life on earth. Hope things get going better for all of you & stay that way. (Hugs) to you all. Terri MM survivor in Michigan also.

Julie said...

Hi Cassie! I am so happy you updated your and Phil's blog. This was one of the first MM blogs I found when I was first Dx in Dec 2009, so you and your family will always be near and dear to my heart and like "family" to me! I am sorry to read of Phil's latest health challenges. Often in MM blogsophere, "no news is good news" and that's what I was counting on for Phil. You guys are so strong to be navigating everything you do. MM is so challenging in and of itself, not to mention everything you guys are doing as a family and professionally. I can't imagine having MM when my kids were young. What a scare this must have been, but I am thrilled to know Phil is home, back at work and back to the "new normal". Having the 2 medical conditions he did must have been soooo scary! Is he on Acyclovir as a Shingles preventative? I don't take mine regularly, and this is a wake up call to do so. Thank you for updating your blog, and letting all of us in your "blogosphere family" know that you're all ok. Beautifully written Cassie! xoxo

Lorna A said...

Hi Cassie and Phil

Glad to hear Phil is now back to "normal" and fingers crossed there are no further blips for a long time in the future.

Lorna x x

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Jackie Zimmerman said...

Hey Cassie
Just wanted to let you know that this blog is wonderful. I work for a company called WEGO Health and it's my job to find different advocates and read their blogs and learn about their lives. Thank you so much for sharing your life and what its like to be a care giver, mom, and wife!

WEGO Health works hard to let patient advocates have their voices be heard, if you'd like to check out our network, where we match patient advocates up to survey/conference/speaking/study opportunities in their specific condition area, check out our link!

Keep telling your story! It's so important! I've been a patient advocate for over 10 years now myself! and Go Blue!

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Cindy said...

I want to thank you both for sharing your journey. I was diagnosed May 2016, did 6 months of RVD, had my auto SCT Dec 30th (Karmanos) and just began maintenance Revlimid. As a single 56 yr old woman who works full time + maintains my small horse farm alone, my hands are FULL. I found your blog early, and learned so much! I pray for good health & long life for us all. Be well!

Cindy said...

I want to thank you both for sharing your journey. I was diagnosed May 2016, did 6 months of RVD, had my auto SCT Dec 30th (Karmanos) and just began maintenance Revlimid. As a single 56 yr old woman who works full time + maintains my small horse farm alone, my hands are FULL. I found your blog early, and learned so much! I pray for good health & long life for us all. Be well!

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