What they don't tell you (part 1)

There's a lot out there about the "truths" of cancer (treatments, emotions, blah blah blah).  However, I still think there's a lot that they don't tell you.   I'm going to try a post here about what they tell you vs. what they don't.

Disclaimer: I'm going to refer to poop in this post.  It's gross, it's not fun, but it's part of what is happening, so any time I refer to poop, I'm just going to say digestive issues.  Picture me saying this slowly, with an expression that says "if you know what I mean".  That way, I don't  have to type poop over and over again.   

What they tell you: The chemotherapy may make you sick, so we're going to give you medicine to prevent that sickness.  
What they don't tell you: The medicine they give you to PREVENT the sickness/side effects may sometimes cause more problems than the chemo would have in the first place (i.e. headaches, digestive issues), jittery-ness). 

What they tell you: You may have a slightly metallic taste in your mouth.  
What they don't tell you: Everything you eat will taste like spoons.   I mean EVERYTHING.  Oh, and also, your tastebuds will change drastically and everything that you loved about food will go out the window.  OH, and you may feel as though you may never love food as much as you did before and that your life as you know it has been drastically changed.  

(I know I'm being dramatic, but this has been hard for me.  I LOVE food.  Like, it's unhealthy how much I love food.  I don't over eat or anything, but I am one of those people who will eat one meal while simultaneously planning the next.  Or, I'll think about what I'm going to order at a restaurant for days before going to it.....I love food.  LOVE it. well, not anymore).

What they tell you: You may get fatigued.  

What they don't tell you: Some days, you may not want to leave your bed.  Some days you may want to crawl under the covers and tell your three year old "No, I do not want to go play the elmo game with you, I want to keep my eyes closed and pretend that you aren't here."  Some days, you are so tired that you collapse on the bed with the light and tv on and just shove pillows over your head until your husband comes up to turn them off.  

What they tell you:  The best way to fight the fatigue is to exercise, so make sure to get up and get moving. 

What they don't tell you: IF you manage to get up the strength to go to the gym on those days, you can't really do much other than walk the treadmill, which is boring as hell.  Also, you manage risking looking like that strong woman who is "taking it all on" by exercising during chemo, when really that is a lie, and the only reason that you are at the gym is to give your preschooler a chance to run around in the day care room.  Heck, next time, I'm just gonna take my lap top and sit and play games while she goes in there.  Why pretend? haha. 

What they tell you: Your hair will fall out.

What they don't tell you: When it does, it's nasty.  It comes out where you least expect, or desire it to.  In the kitchen, at the store, everywhere.  (see my previous post about hair)

What they tell you: You'll have good days and bad days. 

What they don't tell you: Even your good days will be punctuated by digestive issues since your body is still getting back on track.  You never know when this digestive issues will occur and your fear of public bathrooms will no longer be relevant because you will have NO CHOICE.  

What they tell you:  You aren't alone.  

What they don't tell you:  There are way too many YOUNG women going through this.  Not that it's better or worse to be young, but it is different.  What's worse, is that it's different to the doctors, nurses, and medical staff who treat us.  "But you're so young??"  I have now met two amazing women near my age who are going through this with kids around Marie's age.  Uncanny.  They are both within a month of me in terms of treatment.  One is ahead, the other is one treatment behind.  If it weren't for cancer, I would not have met them.  I am very glad that I did, but I hate that I owe meeting these women to cancer.  I don't owe cancer anything, it has taken more than enough from me so far.  I'll tell myself that I would have crossed paths with them anyway.  For one of them, it's true, we did cross paths just before cancer, but we just didn't know how much we had in common when we did.  

What they tell you: You may want to take time off of work because of how you will be feeling. 

What they don't tell you:  You will realize very quickly (for me) that you could never be a stay at home mom.  There is a reason you became a teacher.  There is a reason that you work.  I LOVE my daughter and all of her craziness, but I miss the routine of teaching.  I will say that in the future, come June, I will no longer feel that "I could totally stay home all day" longing that I once did.  I will remember this time, and I will know that it is NOT for me.  

What they tell you:  You will be given your chemo treatments at a medical facility after seeing the doctor each week (or whatever your treatment plan prescribes).

What they don't tell you: You will be given your chemo treatments by an AMAZING nursing staff who cares about what they do and knows as much (if not more) about what you are going through than the doctors.  They also don't tell you that this nursing staff will remember you week to week no matter how many patients they see, and that they truly do care about your comfort, health and overall wellbeing.  I love my nursing staff at Edwards, and I wouldn't trade them for the world.  If you know a nurse, hug them today :) 

What they tell you: Each person is different, no two reactions are the same.

What they don't tell you: Each person is different, no two reactions are the same.  I say this twice because I think that it's something that I don't listen to.  Even though I was told that everyone reacts differently, I still try to compare myself to others.  I find myself doing one of the things that I HATED when I first got diagnosed.  "Well so-and-so went through it and this happened, so that will happen to me."  I need to remember that each week, it is ME going through this.  Not anyone else, and that my reactions will be my own.  Which brings me to the next point:

What they tell you: Everything will be unpredictable.  

What they don't tell you: SO unpredictable, that as soon as you feel comfortable, like you are on a routine, things will change drastically.  Don't get comfortable.  That one day at a time bullshit  is really true.  Whether it's a good day, a bad day, a really shitty day, an amazing day, or just a blah day (those are often) you really should take it one day at a time.  

What they tell you: You are lucky to have a good support system. 

What they don't tell you: It will get very hard to USE that support system.  At least for me.  I have amazing family, friends, and people around me who have all been so supportive.  However, when it comes to tapping into that support, I have no clue.  It's really hard when you are in a difficult situation to figure out what exactly you need.  My support system has been amazing in that most people have just said "Hey, I'm going to do this for you, ok?"  And people who don't know how to help, they have made sure to show their support somehow.  And I love them for that.  

What they tell you: Get fresh air, it will help.

What they don't tell you: Unless you are going through this in the midst of an unpredictable Chicago winter, in which case, you are screwed.  Don't spend too much time outdoors, you may get sick and then you have to go to the hospital.  Don't worry, the dreary cloudy days will keep your depressed mindset where it needs to be, down in the dumps.  Again, I'm exaggerating, but man, I am ready for spring.  That damn groundhog didn't see his shadow, so we should be out of the woods soon, right?  I think all of this would be so much easier if it were nicer out. Not quite summer, because then I would be mad that I couldn't do fun summer things on the days that I was feeling shitty, but more like spring.  Nice enough days that I could go outside, but not so nice that I feel guilty for staying in.  Winter blues are getting me down, man.  

I have more, but my daughter is bugging me to play, and I guess I feel up to it today, so I'm going to make this a multi-part post.  If I think of more, I'll make part two. 

Enjoy.