No Solid Ground

I am firmly in the grasp of chemo fog.  Unless you’ve gone through chemotherapy, you cannot begin to imagine what chemo fog is like.  There is nothing solid around you.  It’s as if you are treading water, six inches from the side of the pool, but for the life of yourself, you just can’t find the edge of the pool.  And no one can help you.  The hand can be grabbing to pull you out of the water, but you don’t have clue what it is or why you should be grabbing it.  My friends who’ve experienced chemo fog will probably tell me that’s a fairly close description, but no cigar.

I hate not knowing where I’m at.  Right now, I can kind of feel the keys under my fingertips, but the Taxol (a toxic chemo drug) has given me neuropathy in my fingers and toes.  I type by touch, but this is becoming extremely difficult.  If I watch my fingers, I can hear my high school typing teacher tell me to “watch the chalkboard, not the typewriter.”  Yes, I am that old.  When I look at the keys, I make more mistakes.  Which makes me mad, so I try to touch type, but get frustrated.  I start running in a circle with no solid ground beneath me.

Then there’s the bane of all writers, my inability to find the right word.  Normally, I don’t have too many problems with this.  I can play around enough to come up with the imagery.  Today, I can’t remember what you call the bag that goes in your tea cup when you want tea (yes, I now know it’s a tea bag, thank you).  However, asking your husband for one of those baggy-thingies will not only get you a strange look, but a variety of baggy-thingies handed to you.  I am typing words with letters transversed (which is not the right word, but I just can’t think of it right now – UGH!!!) and they look right.  Then I can’t remember why I went into a room, even if it’s the bathroom and I really have to pee. 

My head is no longer attached to my body in any sense other than the physical one.  It moves, blinks, eats, smells, but it doesn’t really seem to do much else.  It’s like having a big boulder (I was going to say large rock thingie, but the word came to me) on my shoulders that does nothing but display a variety of hats.  Hats that I often can’t remember where they came from even if I bought them.  This must be how a dementia patient feels. 

This is why I am not freelancing right now.  My work is not up to par.  Look if I can’t remember what a tea bag is, I’m pretty sad.  Chemo fog is like that.  It sucks up all your good brain cells and leaves the ones that you damaged with too much partying in college (okay Mom, the secret is out).  The ones that never fire on all cylinders anyway.  Seriously, it’s tough when you look at your child, know he’s yours, but can’t for the life of you remember his name (I know it’s Kyle), but you can remember the nickname you gave him, or at least part of it (the bug in doodlebug).  Calling your son “Bug” isn’t exactly good parenting, but at least he got recognition.  Braeden just gets called “nut,” which is short for peanut.  At least the nut fits.

So as I struggle to find some kind of solid footing right before Christmas, I find it difficult not to beat myself up.  My husband, sons and Mom deserve to have a better Christmas than with their wife, mom and daughter to be walking around in some kind of weird drug induced haze.  As I was wrapping presents, I realized I’d neglected to purchase anything other than the traditional gift for my mom or mother-in-law.  Nothing, zip, nada.  Sorry!

And that brings up another problem with chemo fog, which is especially troubling for me.  I used to be able to keep everything in my head.  I could juggle schedules, recipes, shopping lists, a conversation and a book at the same time.  Now, I need to stick a post-it note to me to remember why I am walking to the kitchen.  Shoot, I just took a minute to check out the Bengals game and couldn’t remember what I was writing.  So very frustrating on too many levels to even go into.  All my meds are written out in a notebook to remind me what I need to take since it varies throughout the chemo cycle.  Great idea, if you remember to look at your notebook or if you remember to write down what you took when.  Of course you also need to remember which drug it was if you take two different ones at the same time.  Fortunately, John has learned the names of the drugs and knows what they look like so he asks me, based on the list, if I’ve taken the appropriate meds.  I now even have to write down how often I need to take it.  I can’t even remember that.  What’s next, the geriatric pill box with the timer?  My dad had one of those and HATED it.  I don’t think he ever used the alarm, but I know he hated sorting out his meds.

So I have no solid ground, but there is a solid veil of love over me.  No matter how much I beat myself up about ruining Christmas, I am here for it.  God still reigns in heaven and tomorrow we will celebrate the greatest gift the world has ever and will ever receive, the gift of Jesus.  My family loves me with unfailing love and friends pray for me.  The ground may not be solid, but if I fall the landing will be soft.

Life’s A Beach

Yesterday I spent a wonderful afternoon feeling nearly normal.  I had the opportunity to go out for lunch with my husband, do some shopping, then get a peppermint hot chocolate at Starbucks.  Before October 17, 2012, we did this at least once a month.  Now it’s a major production and I’m not talking about getting a sitter.  We need to time our dates based on where I am in the chemo cycle.  Actually, yesterday wasn’t a great day since my white count is tanking, but I really needed to get out of the house.  And sometimes sanity has to trump health concerns.  Besides, it gave me an opportunity to wear my new wig.

While we dining at our favorite restaurant, we talked about, what else, my cancer.  It’s an all-consuming topic.  I cannot wait until the day that I can actually go an entire day without thinking about my cancer.  That will be a while.  John wanted to know what it was like for me, aside from the physical challenges of joint pain, neuropathy and nausea (all of which were in the brochure, by the way).  I told him it was a lot like being on a beach.

Imagine you are on your favorite beach in late fall or early spring.  The sky is gray and it’s misty, cold and damp.  Despite the conditions, you are at the beach and you will take a walk on the sand since you are, after all, at the beach, and by golly this is what you do.  Jacket zipped, hat in place, mittens on and shoes tied, you tell your husband/wife/traveling companion that you are taking a walk.  After they point out the obvious bad weather, you reiterate that you are, in fact, at the beach and you did not come all this way to just sit and watch the ocean.  You are going for a walk – period.  After they roll their eyes, you set out, determined to enjoy this walk.

As you set off, you realize the air is much damper and colder than you realize.  It’s like the air is trying to push through your pores, straight to your bones.  You pull up your collar and march onward.  A little wet weather is not going to ruin this walk.  As you walk, you try to remain upbeat and talk to yourself.  However, it’s hard to make sense when your teeth start to chatter.  Pulling the hat down and crossing your arms across your chest for warmth, you pick up the pace to stay warm.  This weather is not going to beat you.  You can hear the surf pounding next to you.  When you pause to look at it, you realize you can’t see it.  They you look toward higher ground and you can’t see that either.  In fact, you can’t see past your own feet.  Like many damp, cold days by the ocean a fog has rolled in and it’s as thick as the proverbial bowl of pea soup.

Fog has this weird way of disorienting you.  Even with GPS and fog lamps, it’s still hard to tell where you are on the road even if you’ve driven the road hundreds of times.  There are no landmarks you can use to orient you.  Basically it’s a leap of faith that you’ll make it to your destination safely.  When John and I were dating, there was a really foggy stretch of I-71 I had to drive between Louisville and Cincinnati.  Even though I drove that stretch every week, I still got disoriented when I couldn’t see more than 3 feet in front of me.  I knew the fog bank was generally 5 miles long, but that was the longest 5 miles I drove.

Back to the beach where you are now standing in a fog disoriented.  You weren’t paying attention to where you were walking because you were making a point.  Are you 500 feet or a half a mile from your starting point?  There is no reference point.  Shivering you realize that while you know you’re on the beach, you’ve got no clue where or how you’ll get back.  You know you need to do a u-turn, but how far do you walk back.  Now a light rain is starting and messing up your footprints, which you had just brilliantly decided to track back to the starting point.  Now you are not only cold, but you’re wet, mad and a bit scared.  You turn around and start walking back trying to figure out where exactly you need to stop.

You try thinking in reverse – what were you thinking as you walked to time the trip back.  The fog is getting thicker and thicker and aside from the sound of the waves you hear nothing to orient you and your visibility is down to zero.  After what seems like an eternity, you hear a song.  It’s a song that means something personal to you.  It’s your song, the one you share with your special someone.  And there is a faint light in the distance.  You slowly make your way toward the sound and light and realize it’s coming from your vacation home.  Your true love is guiding you back.  When you finally reach home, you rush into their arms and realize you are safe.  What’s even better is they don’t give you “I told you so,” or anything else that you probably deserve.  You just get a much-needed “I love you.”

Chemo is like a foggy beach.  You can’t see where you’re going.  You’re stuck on the beach.  If you stop chemo, you’ll be forever in the fog because the monster will definitely be lurking in the fog waiting to grab you.  You know that at some point the fog will break, the sun will shine and you’ll see the sun shining on the waves and you’ll be able to see your path.  Until then, you’re stuck in the uncertainty of side effects, lab numbers, and doctor visits.  You just wait until the fog starts to lift.  And if you’re lucky you have a true love that brings the music and has a light to keep you safe until the sun shines again.

That Wasn’t in the Brochure

I have decided that when I’m done with this mess called ovarian cancer, I’m writing a brochure for newly diagnosed patients.  This will not be the run of the mill brochure telling someone about the obvious.  This will be all the things that should have been in the brochure, but aren’t.  And the list is endless.

When you embark on any kind of cancer treatment journey, the oncologist sets up a treatment plan.  The plan generally includes the chemo drugs, office visits, supportive medications for the delightful side effects of the chemo, and assorted other details.  They tell you about the side effects of chemo, which could take up an entire blog entry and I won’t bore you with the details (check any reputable website for a comprehensive list).

What they don’t tell you is that most of the side effects don’t follow a predictable pattern.  My first chemo left me nauseated, fatigued, numb, achy and every other side effect on the list.  It also messes with your digestive process, meaning that whatever schedule your body was on before treatment, you can forget it.  I’m either downing laxative to compensate for the anti-nausea drugs and steroids to compensate for the chemo treatment or I’m eating a low fiber diet to compensate for the chemo treatment.  There is no happy medium.  Goes the same for fatigue.  The literature talks about fatigue, but doesn’t tell you that you can get nasty chills when you get too tired.  We’re not talking about the chills you get with the flu.  We’re talking bed shaking, knee banging, full-out chills.  I routinely wake up my sleeping husband with my shivering.  And there are not enough blankets in our house to keep me warm.  Then we have the hot flashes.  I can never be sure if those are Taxol related (a chemo drug) or menopause related (another delightful side effect of ovarian cancer).  Pull the socks off, pull the hat off, the sheets and anything else I can manage depending on where I’m at.  If that works, it’s Taxol related.  If an ice pack on the neck works, it’s menopausal.

When I had my treatment on Friday, I started getting hot. Was it a hot flash or a side effect?  My nurse wanted to slow my Taxol, which is a 3 hour infusion.  I opted for an ice pack, hoping it was a hot flash.  I guessed right.  The only thing that was good was that if I’d ripped off my scarf, no one would have blinked.  Most people at the Cancer Center are bald anyway.  You can’t do that in public. Well you could, but I’m not that brave.  Well, I guess I would be if I was REALLY hot.  No where in the literature was the possibility of hot flashes listed as a side effect.  My nurse said it was.  I texted my friend Cathy to complain.  She agreed that hot flashes are the worst and an awful side effect.  I told her that wasn’t in the brochure.

Neuropathy is another delightful side effect.  Many patients get tingling and numbness in their hands and feet.  It’s listed everywhere.  What’s not listed is that the neuropathy effect is cumulative.  And it needs to be watched carefully.  Guess who has neuropathy in her hands?  Now I wonder if it will get worse.  So far so good this time.  When you write, neuropathy in your hands is not a good thing.  My dad had neuropathy from his diabetes.  That’s cumulative too.  They do say it could go away after treatment, but maybe it won’t.  If it gets worse, I will need to change from Taxol.  The alternative is a cousin to Taxol and depletes your white blood cell count down to almost nothing, necessitating a painful shot of Neulasta to boost the cell count.  Not only does the shot hurt, but then your bones hurt since your bone marrow goes into overdrive to create more white blood cells.  That’s not in the brochure.

For me, the biggest omission from the brochure is what you’ll do after you go off your treatment plan.  For the foreseeable future (until March 8, 2013 to be exact), my life is dictated by doctor’s appointments, chemo therapy treatments, and lab work.  Then I will be off the hook for weekly labs and just have monthly monitoring and CT scans.  I will slowly get my life back.  Then I need to decide what to do.

I was fortunate to have a chaplain visit me Friday.  Everyone in the mosh pit (the large treatment room at the cancer center where you get to relax in uncomfortable recliners and be subjected to ABC daytime TV for the duration) was napping, but me.  John and I were chatting when she arrived.  She posed the question about what I would do when treatment was over.  I explained that I knew that God didn’t give me cancer, but I was sure He had a plan for me and my experience.  I had all ready decided that I wanted to volunteer with my local ovarian cancer support group.  But God planted something in my head when my dad was ill back in 2000, that I think I’ve ignored until now.

I was always amazed by the compassion and listening ability of chaplains.  They see such unspeakable suffering and life at what could be at its worst.  Yet, they are able to sometimes help people to find strength and courage in the darkest of times.  I have been blessed by the lay pastor at our church and the chaplains at Good Sam.  They are always willing to listen and ask the best questions to make me focus on the positive.  I’m thinking that might be what God has planned.  I plan to talk to our pastor and do some research, but I think working with cancer patients as a chaplain might be my calling.  And that definitely was not in the brochure, and I’m glad.