What Not to Say to a Cancer Patient

Let me preface this by saying, I am not pointing to a specific person or event. People have commented on how I put a face on this awful disease and I appreciate that. This post is not meant to keep anyone from making conversation. What I want it to do is make people think before they say something. I’ve said some things I wish I could take back now because I realize just how (okay, chemo brain is setting in and I can’t think of the right word now) they were what I thought I should say rather than what the person needed to hear. This is not an attack, more of a suggestion.

I have been doing a lot of research about cancer, mostly because I’m stuck in the house and if I bake anymore goodies I will probably be the first person in history to actually gain weight while undergoing chemotherapy. I’ve seen how to cope, how to be a good caregiver, how to care for yourself, what to eat, survivor stories and the list goes on. What I’ve not seen in any great detail is what NOT to say to someone with cancer. Yes, there are some things that cancer patients would rather not hear, at least in my opinion. I did run this list past my friends Cathy and Lisa who are both cancer survivors, and they are generally in agreement with me.

1. “You look good.” Okay, this is a compliment and, yes, it’s nice to hear. However, there are many times when we are just putting on our happy face so others don’t feel uncomfortable. And sometimes I feel like people are saying, “You look good – for someone with cancer.” I know I look very different. My eyebrows are very thin, my eyelashes look like they’ve been parted in preparation for braiding. My face is very pale, unless I’ve just completed chemo, then I look perpetually flushed. I bought my wig before the chemo really kicked in, so now the hair color is too dark for my pale face. Sorry folks, I don’t look good. I just don’t look as bad as you thought I would.

2. “You’re so brave.” No, I’m not. I’m scared to death. I have the cancer monster sitting on my shoulder all the time and he chants in my ear “What if it doesn’t work? Your numbers are too high. You won’t see your boys get married.” However, I have two young sons who can’t afford to have a Mom show fear because they are scared enough as it is. My husband is now our sole provider and is often doing the work for two around the house so being scared around him is rarely on option. I hide it from my mom (or at least I did, the cat’s out of the bag now). So while I may crack jokes, find the bright spots in chemo (no shaving my legs for the time being) and smile, inside I am terrified that I am not going to beat the monster. And the monster knows it.

3. “Only ___ treatments until you’re done. Isn’t that great!” Yeah, I have ___ number of times to experience nausea, body aches, headaches, light sensitivity and wonder just how much more neuropathy my hands and feet will have to endure. I don’t focus on how many treatments are left, despite what I say. I focus on how I’m going to get through the next day, or on a bad day, hour.

4. “Spring will be here soon and you’ll be done.” Yes, spring will come with all its new beginnings. Even the cancer monster can’t stop that. As I said previously, I can’t even think past tomorrow. John is trying to plan an anniversary get-away for us in May. He doesn’t understand I can’t think that far ahead. I can’t imagine a life without it revolving around lab tests, doctor visits and chemotherapy because that IS my life right now. I know I should look forward to the future, but I can’t. It’s too hard. What if I don’t get better, then what will spring bring? I go through the motions, but it’s just too hard to think that far ahead.

5. “You’ll beat this and be fine.” This is the one I really hate. Aside from my friends Cathy and Lisa, I immediately tune out anyone else who says it, even my mom and husband. I don’t care that your friend’s cousin, the cashier at the grocery or the person in the other cubicle at work beat ovarian cancer. Statistics don’t lie. Statistically speaking at some point this disease will kill me. Granted it could be 40 years from now, but it probably will. Even my oncologist, who is an excellent doctor and does some cutting edge research, says there are no guarantees. Yes, some of this is the cancer monster talking, but it’s also the reality I face. And I will never “be fine.” I will forever be dogged by ovarian cancer. I will put it on every medical questionnaire I ever answer. My labs will always be done in the Outpatient Cancer Center at the hospital. I will always bear the scar of my Port-a-Cath and hysterectomy. While I may forget for an hour, day or even longer, I will never actually beat it. To beat it means it won’t come back and that may or may not be the case. Cathy and Lisa have every right to tell me this. They face the same future I do. And I value those words coming from them. They get it. My niece Brittany, unfortunately, gets it too. She just completed radiation for thyroid cancer. Unless you’ve had cancer, you don’t get it.

None of this is meant to be mean. I know people mean well and just don’t know what to say so they say these things. And that’s okay. But please remember that is always okay to say, “I don’t know what to say,” because most of the time I don’t know what to say either.

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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.

What’s a Trooper?

I did survive my first chemo treatment – side effects and all.  Yes, I am tired.  Yes, I am nauseated.  Yes I am cold and feel like I have the never ending flu.  It stinks, yet through it all I survived.

My mom keeps saying that I’ve been a trooper.  My nephew is a trooper.  He spent a year in Afghanistan praying that his unit would be safe.  My dad and my father-in-law were troopers.  Both served in the US Army and both were in Korea after the war.  Actually, their tours were served one right after the other (I can never remember who was there first though).  So I have a problem with being called a trooper.

My dad was a trooper.  I’ve been thinking alot about him today.  The last 9 years of his life, he battled MRSA, pneumonia, congestive heart failure, a heart attack (in Hawaii no less) and a final battle with MRSA that he lost.  He never met his youngest grandson.  And while I know it, I never got to hear a final “I love you and I’m proud of you.”

So I wonder, would Daddy say I’m a trooper now?  Would he be proud of the way I’m handling this ugly mess of an illness?  The one that causes my husband sleepless nights, my sons an incredbile stress to see a sick mom, my mom hours of worry, and my fear that I will overtax my friends’ invitations to help us out?  Would he say “I’m so very proud of you.  Keep fighting.  You just need to take it  as it comes.” Or would he say, “C’mon daughter.  Step it up.  Stop feeling sorry for yourself.  It doesn’t do you or anyone else any good.”

I’m thinking he would do a little of both, depending on the situation.  I was very fortunate that I was a stay at home mom or a student for most of my dad’s illness.  I got to spend a lot of time with him once he retired.  We were always close, but got closer.  He was there to support me and give me a lecture when needed.  I will never forget getting home from our flight from Boston with Kyle after leaving Russia.  My mom and my sister-in-law ran to greet John and Kyle, while my daddy ran to meet me.  It was surreal.  He had been waiting so long for a grandson, but his first reaction was to hug me.

So am I a trooper?  I guess it depends who you ask.  Somedays I feel like a trooper, marching along through this journey called ovarian cancer and others I melt into a puddle of tears.  I’ve realized as I’ve written this that there is no normal in my life, there is only right this minute and how I feel.  Right now, I feel like a trooper.