There is Nothing to Fear but Chemo Itself

I am halfway through my first chemo cycle, and I finally feel enough clarity in my mind and thoughts to write again.  It’s only been a week, but in that short time there have been so many things to say that I’m not sure how to direct this next post.  Do I thank everyone who has helped me?  Do I talk about my experience?  Do I talk about what is next?  Do I list my somewhat comical somewhat pitiful list of do’s and don’ts?  This is why more people don’t blog.  You can’t seem to do it when you have something to say and then everything after is making up for lost time…but then again that’s the way chemo works too.

                Chemo means Fear.  Maybe not in the dictionary, but in life…yes.  Now I say that, and I see the golden opportunity for some positive well intending person to comment that Chemo means Hope.  Hold your typing though, because while you are right, we are talking about two very different things.  Chemo that means Hope is the thought of Chemo.  Chemo that means Hope is Chemo from a distance.   It’s a well thought out plan.  It’s a process you’ve been through and had success with.  It’s an idea.  It’s a solution.   It’s knowing that down the road everything will be okay…

                That’s not the Chemo I’m talking about.  I’m talking about the in the moment Chemo.  The one that happens right after treatment.  It’s more than a thought.  It’s not from a distance.  It’s no longer just a plan.  You’ve barely started.  You can’t even form ideas.  There is no solution.  It’s knowing that the road has only just begun…

                I didn’t recognize my cat one morning.  Sammy, my cat, jumped up on the kitchen counter as I was attempting to eat cantaloupe pieces brought from a sweet friend (thank you).  I stopped eating and just stared at him.  Part of my mind was trying to convince me not to be scared…this was Sammy.  However the rest of my mind had no idea what “Sammy” was…what “Cat” was…what “Pet” was.  So I just stared at him and he stared at me until I became so afraid I slowly backed away into my bedroom and shut the door against the creature living in my kitchen. 

                The trouble is that you have an obvious fear…unknown creature in kitchen that you feel should be your cat…but that obvious and present fear compounds into many possible fears.  What if I can’t recognize my husband?  What if Sammy never feels the same again?  Was Sammy as afraid of me as I was of him? (the answer to that is yes, but we have worked it out since.)

                The nausea is a fear that is battled constantly.  Everyone says it’s not that bad if you take all the medicine when you are supposed to.  I was afraid to miss a medicine so I can tell you I definitely took every one.  The medicine may keep you from actually vomiting, but it does not stop you from feeling like you are going to vomit any moment for four days straight.  You fear it getting worse.  You fear it won’t go away.  You fear you aren’t getting your nutrition.  You fear your favorite foods will be lost to you forever (sadly, peanut butter crackers will now be a thing of the past for me).

                One night I had crystal worms in my vision.  It feels just like it sounds.  One moment I could see just fine and the next moment everything was bright and distorted, and it felt like I was looking at the world through crawling worms made of crystal.  Maybe now that I know it can happen and will go away I can appreciate the magical quality of it, but that is going back to Chemo as Hope.  During Chemo as Fear there is nothing magical.  There is just panic that you’ve just lost your sight and you are desperately looking at your husband wanting to see his face again.  And once it does go away you are afraid of the idea of ever not being able to see that face again.

                Finally you have the fear of the absence of yourself, and that is a fear that is imbedded in every single aspect for those few days….because you are NOT yourself.  You do not function, think, talk, move, feel like anything you have ever been before.  This is a feeling that I am not sure I will ever be able to put into words.  I call it Chemo Brain and it simply means an absence of everything you.  Honestly, if I talked to you between Friday through Monday there is a strong chance that I remember very little about it.  That is scary, because there have been so many who were there for me, so many who loved me, so many who helped me in ways that were great and small and the whole time you are worried you will never be able to thank them enough.  You worry that your lack of communication will be construed into anything other than a complete loss of self and functionality.  You worry if you forget something they won’t understand that it doesn’t take away the fact that your pain was lessened for a moment because of them and in that moment you couldn’t have been more grateful.  You worry that even if you do remember and you do have the moment to say thank you, words will not be enough and you can only hope they know…

                This is what I mean when I say Chemo means Fear.  In those few days there is very little hope, because there is no room for hope in the madness that consumes your body.  But then one morning you wake up, and you feel just a little better.  One time someone says, “just a little longer and you’ll feel a little better,” (thank you) and you know they are right.  And that is when Chemo as Hope steps in.  Thankfully his visits last much longer…

               

                And for those of you who read through all of this hoping to find the list of do’s and don’ts, here are four to keep you entertained (I can guarantee if you are reading my blog you are not a don’t):

1.  Once your body is starting to feel better it can do wonders to your spirits to just sit outside for a moment and enjoy the sunshine.  A few people have suggested this to me and it has been a beautiful warming idea and I thank you.  (You know who you good little biscuits are).  However if it is the day or two after chemo, please do not send me a message telling me to go sit outside and enjoy my day, because I feel like DEATH, there is NO ENJOYMENT, and instead of thanking you, I will only want to tell you where I think YOU should go sit….it may be warm but there’s no sun.

2.  It is really helpful to give sick people reading material.  The first couple days after chemo you can’t really read, but once your eyes settle down it offers a nice way to pass the time and get your mind off of things.  I’ve had several nice book gifts and book suggestions and I thank you.  (You know who you good biscuits are).  However, it is a horrible idea to not look through a book you are giving to someone with cancer to make sure the book is not filled with people who are dying from cancer and talks about important rituals as you prepare yourself for death…I don’t think I need to explain why this one is a don’t.

3.  This one is tricky, because it is unavoidable to a degree, so really what we are going for is tact.  When people find out you have cancer they want to share their personal stories with cancer.  This is normal.  This can even be helpful, because it helps remind you that cancer is fairly common and you don’t feel so alone.  We all know that people die of cancer.  When you want to share your experience with cancer, I understand that sometimes that is going to be the end of that story and so there should be a little careful navigation on both parties.  Obviously, I want to be there for you and feel bad for your loss.  Obviously you feel bad for my situation and don’t want to scare me, so let’s both just let that story unfold naturally.  Basically saying it ANY other way than the following is acceptable:

Me: “I have breast cancer.”

You: “My cousin’s wife died of breast cancer.”

Such an immediate reaction of death connected with my situation is uncomfortable for me.  As selfish as it makes me feel, please use a little tact and I’m sorry for your loss.

4.  Everyone wants a hug from the girl with cancer.  Let’s be honest…the girl with cancer wants a hug too.  But the girl with cancer just got a port-a-cath put in and for the most part hugs are uncomfortable at best.  One wise soul gave the “to the right, loose, quick, shoulder pat hug” and it’s the only one that doesn’t make me nervous.  You don’t want to hurt me and I really don’t want to tell you if you hurt me so let’s go with looser is better for a while.

                Thank you  Reader for visiting my blog.  If you’ve read any of my writing before you’ll find evidence above that Chemo Brain has still not fully gone away, but I appreciate you reading and listening and being there.  J

-The Perky Pepper