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.  

I get knocked down...

<Sang to the tune of Chumba-Wumba's one hit wonder>

I actually have a LOT to write about.  I really have about three blog topics rolling around in this big bald head of mine.  However, I'll start out with what I think people are most interested in:  me.

It's very hard to remain positive (get back up again--chumba-wumba reference again) when every time I start to feel normal again, the stupid chemo drugs bring me down.  This time around was very hard.  I don't know if it was because it was actually hard, or because I was just realizing the weight of it all.

Last week I was feeling pretty good.  I had a really good week.  I had some coffee dates, some lunch dates, I took Marie out and about, I was overall doing a really good job at keeping busy.  Wednesday, Troy and I had an early Valentine's day dinner.  We went to the Melting Pot and I ate a LOT of food.  My appetite was back, and in general things were just going pretty well.  Then, on Valentine's day, it was chemo day again.  I decided to go alone this time.  It's not that I had no one to go with, a lot of people offered, but I just figured I'd go by myself and get some rest and relaxation.  So, I dropped Marie off at school, and headed in to Edwards Cancer Center.  My appointment was early, which at the time I was actually pretty happy with, so I went in with high spirits ready to go.  They took my blood, and, as usual, my counts were high.  This kept my spirits up, so in I went to the doc.  He gave me my go ahead to have the "good stuff" (that's oncologist/chemo nurse humor I think--they keep calling the "stuff" that makes me feel like crap "good stuff"...I still don't get it).  I went back into my chair and I was pleasantly surprised to see a gorgeous white board drawing on the board in my room.  My cancer buddy's husband drew it the week before when she was there for her treatment.  I smiled, took a picture of it and sent it to her.  Things were looking well.  I turned on my t.v., and began the drugs.  The nurse was nice and chatted at me the whole time, leaving me alone when she could tell that I wanted to be left alone.  Overall, it went by quickly.  Then, as if on cue, when I was ready to leave they pulled the port out, and it started spewing blood.  It was like my body's way of saying "Hahaha, we got you this time".  I went home, and that's when it started.

I started out feeling fine, as usual, but then (given the earlier time for chemo) my symptoms started earlier than I thought.  I was exhausted, nauseas, and overall pissed off.  AND I had a nice giant bruise where my chemo port lie in my chest, waiting, laughing at me.

But, it was Valentine's Day, and my daughter was expecting fun (or, at least I thought she was).  So, because Troy had to work late, I set about my plans.  I ordered a heart-shaped pizza from Lou Malnati's (my favorite), set up our Wii for her to play (she had never really played before), and picked out a movie for us.  For feeling as sick as I did, I think I did a pretty good job.  

So, she had a good Valentine's Day after all. 

Then, Friday rolls around.  Bruise is bigger--staring at me again.  It's almost as though I could hear it: "this time around is going to suck--be prepared."

I took Marie out to lunch then we went to get my Neulastra injection at the Cancer Center.  I decided to take her this time around because that way Marie could see where I go to the doctor, but not have to see me actually have chemo.  On the way there, I realized that this woman that I had been in contact with may be having chemo while I was there.  I was put in touch with her through a nurse at Edwards, and I decided to call her.  She and her husband were there for her chemo treatment, so I popped in to meet her.  She was incredibly nice and we hit it off (at least I think we did--if she ever reads this, I hope that she's not creeped out).  She has a daughter Marie's age, so we are going to try to get them together soon.  I have two cancer buddies now.  I would have preferred to hang out with these two wonderful women in another way, but I'll take it.  

Saturday, Troy took Marie to Freeport for the night.  I slept in, then my siblings came over.  We pretty much sat on the couch all day.  I couldn't really eat anything, so that sucked.  It's like everything tastes like spoons, which makes me sick.  So I'm not sure if I'm actually sick, or if it is my taste buds f-ing with me.  I was feeling pretty crummy, so I took at Ativan at 7:00 and hit the hay.  I think I've realized that I need the Ativan to get to sleep at night in the few days following chemo.  I actually just took one, so we shall see how long this lasts before I pass out.  

Then on Sunday, of course, our renters had a problem with the townhouse, so Troy had to go fix it.  Marie and I hung out (and by hang out, I mean I watched her play with her toys, video games, and watch tv--mom of the year, I know).  Either way, I have an awesome daughter who is really able to sense when I'm not doing well, and she kind of just hung out with me without being too needy.  I know how horrible that sounds, but my ability to be a fun mom diminishes for a few days after chemo.  

Yesterday, I started feeling a bit better, but still slightly uneasy.  Marie and I met our awesome friends Chloe and Oly for Mcd's and the play place.  We were definitely not the only ones with that idea.  It was awesome. Marie was able to run around like a madwoman with a good friend, and I shared a shamrock shake and fries (unfortunately the first real food that I had eaten all weekend) with a good friend.  Happiness.  

My weekend may have been punctuated with nausea, fatigue, headaches, and overall icky-ness, but it was still a weekend nonetheless, and I was able to enjoy large parts of it.  

(she's making her "arrrrhh maybe" face--that's her way of saying "argh matey")

It has been a busy couple of days.

This weekend was one of my good weekends.  It seems like I'm getting into a bit of a routine.  I'm sure as soon as I get into this routine, I'll start the new drug and then I'll be thrown for a loop again.  But...It's ok because I'll figure out a new routine, and then I'll be good.

This weekend I went out with a group of friends to a local Irish pub-type place to see a cover band/singer.  It was a lot of fun.  In fact, I probably had too much fun if you ask me.  It was definitely my first time doing that since starting chemotherapy.  I was quickly reminded the next morning why I don't do that too much.  Ugh.  I felt nauseous for the first time since starting chemotherapy, hah.

So it's Valentine's day this week.  What are my plans, you ask?  Oh, no big deal, just getting chemo drugs injected into my veins.  Ugh.

For an early V-Day outing, Troy and I are going to the Melting Pot.  It's going to be great because it is a place we never go to (and we eat out...a lot).  Yum.  My mom is being awesome and watching Marie for us so we can have a date night.

Tomorrow, I was supposed to have my wig fitting/consultation and get the wig that I got from the cancer society cut.  However, she got the flu, so she had to cancel.  Even though at the moment, I'm totally ok with the wraps, I was kind of bummed.  Actually, I was really bummed.  I was actually hoping to wear it on our date.  Oh well.  I rescheduled for next Tuesday.

Marie's first school pictures came in!  I cannot believe how big she is getting.

We have officially signed her up for ballet and for swimming again.  She starts swimming next Thursday and ballet next Saturday.  She's been asking for weeks to do "dance class right now".  Finally, I caved.  We had to buy her a leotard and shoes for the class.  Here's her trying them on.  She's EXTREMELY excited.  

Life seems almost normal for a moment.  :)

New TV, New Book, Old Hobbies

I've figured out somewhat of a schedule.  Right now I'm on a 14 day cycle.  I have chemo every two weeks.  On the Thursdays that I have chemo, I'm fine.  The next day--fine.  Roughly days 2-5 of the cycle?  Sucky.  I'm tired, hungry (but not), nauseous (but not), have headaches, and overall just want to crawl under blankets and leave society.  Days 6-14 I'm great for the most part.  I may have a day where I'm a little worn out, but overall, I'm good.  On the sucky days, all I want to do is lie in bed and watch TV...maybe pick up the computer, but I've noticed that on the bad days I don't even want to do that.  This time around I tried working out to make myself feel better and I realized that I'd save the working out for the good days.

I'm getting bored with what is on TV, however.  I'm home all day every day.  Even on the good days I have the TV on at some point.  I can't help it.  So--in regards to television-- I've made a decision.  No more bad daytime TV while I'm home.  That doesn't mean no more TV...I mean, we are talking about me here.  I can't do no TV.  I just mean no more marathons of SVU or bad sitcoms during the day.  Instead, I'll do marathons of shows that I choose.  I know this may not seem that different, but for me it is.  Usually during the day I'll just watch House, ANTM (America's Next Top Model--duh), SVU, Regular Law & Order (yes, I call it regular), King of Queens, and of course, Friends.  These can keep me going for a while, but when I start to see the same episodes over and over again, I realize that I have a problem.

I know it might seem like I'm watching a lot of TV, but really I'm multitasking.  On my good days, I usually watch TV while I'm doing something else.  Reading, playing on Facebook, blogging, surfing the internet, etc.
I know, my life sounds insanely interesting.
(by the way--the TV watching usually occurs during Marie's nap time, during her outings with grandma, or while she's at school--so I'm not a bad mom, at least not because of this, haha)

Well, I was complaining to Troy the other day that we don't have any shows that we are into, and I miss that.  We used to watch a lot of things together.  LOST, Biggest Loser, a few seasons of American Idol, etc.  But, we both got so busy that we didn't have time to pick a show.  That may sound odd, but we didn't have time to wait for one another to watch a particular show.  Usually, by the time we got Marie to bed, we were lucky to stay awake long enough to talk to each other for a few minutes without a toddler with us.  Well, now that I'm not working (and again, it is the best decision I ever made--I have no idea how people do this while working), we have a bit more time.  Troy's new job is also a lot less stressful for him.  I mean, he is working really hard, and really long hours, but he's happy when he gets home, and usually more willing to stay awake and hang out.  SO, a few weeks ago, my friend Alex was in town and she said to me "at 8:00 tonight the TV is being hijacked because I have to watch my new show"

I said, "what new show?"

She said, "The Following".  I watched the previous weeks episode and decided that I was hooked.  I convinced Troy to watch it the next night, and then he was hooked.  My parents are also hooked.  So now, we have a show.  I love it!  It's so deliciously creepy and exiting.  It sounds cheesy, but it is awesome to have a TV show to look forward to each week.  

Then, the other day, while Marie was at school, I told my mom that we should scrapbook.  I hadn't done it in a while, and it would give me something to do on the days that Marie is at school.  While we were doing this (I can't just scrapbook without the tv on...it's nearly impossible.  I get bored and antsy.  I know, I'm weird, but you knew what this was) I decided to turn on netflix and I chose the show Revenge.  My mom and I literally watched 9 episodes in one day.  Officially hooked.

Love it.

Today, Marie had a playdate with her friend AJ.  It was superfun and supercute.  Marie is officially obsessed with this boy.   It is absolutely adorable.  It is always nice to be able to talk with an adult while Marie is having her own social hour as well.  GREAT morning.  Then, because she was so tired out from playing, I put her down for her nap when we got home.  While she was napping, I picked up a book that I've been meaning to read for a while, Room.  I've been trying to read Casual Vacancy by JK Rowling for about two months now and it is just sooooo slow.  I've never been this turned off by a book before.  Usually I'm a fast reader, as you'll soon see.  I'm still in the first 25% of this book and I can't get into it.  So, I picked up Room today at around 1:30.  By 5:30, I was finished with it.  I loved it.  Such a good book with SUCH an interesting point of view.

So, moral of today's post: I feel like I'm getting little bits of my life back.  I'm watching new and good TV again as opposed to reruns of the same old stuff.  I'm scrapbooking again.  I'm reading again (this is a treat because that was something I was looking forward to doing with my time off, but I haven't been in the mood).  I'm making time to see friends and have adult conversations while Marie is able to have her play time too.  Not working has been a lot harder on me than I thought.  I used to have a purpose with my day to day life, and now, I don't.  I know that being a mom is a purpose, but on the days that she isn't here, that is when it gets hard.  Especially on the days where I'm feeling good.  Then, I feel guilty about not being at work.  I think, is someone going to see right through me? I technically could be working right now.  I feel fine.  I should be working.  Someone is going to see me, realize this, and call my boss and rat me out and I'm going to get fired.  

Totally rational, I know.  Don't worry, to balance those days out, I have the days that are filled with doctor visits, blood counts, and chemotherapy.  Then I have the days where I want to stick my head in the sand like an ostrich.  So, overall, I think it is still a good thing that I'm staying home.  Besides, now I can finally catch my scrapbook up to date.  Previously, it was stalled at Marie's 6 month pictures...As a closing to this ridiculously long post, enjoy a flashback.  Photos courtesy of Jenni Kenney Photography and Design.

Slick

I'm not sure how many of these posts will be about hair, or lack there of, but this is another one.  So, when I decided to have my mom help me get rid of the hair, I figured we'd do the clippers and the rest would just fall out on its own and I'd be ok with that.  Well, I was.  For about a day.

I had this look, which I posted yesterday:

   <----notice the stubble on top.  

For a little while, this was ok.  Marie thought it was fun to rub my head.  (She even told Chloe, "Rub mommy's head, it's fun") 

However, after about 24 hours, it started to hurt.  I think, despite all of my research, I figured the scalp would tingle a bit and then everything would just fall out on its own.  Little did I know, that my head would be on fire!  Every little thing that touched my head felt like it was snagging the little bit of hair that was there.  

So, yesterday, I tried to take a bath.  I love baths.  Troy always teases me about baths.  I think it's the mom in me.  Bath time, for me, is a reason to go in the bathroom and lock the door and not be bothered.  I can grab a good book and just hang out, by myself.  So anyway, I took a bath and I dipped my head into the water ONCE.  When I arose, the sight was disgusting.  This may be gross, but I think people should know how this actually happens.  The hair (again, little stubbly hairs) was everywhere in the tub.  I literally got out, took the shower head (thankfully we have a removable one in the tub), and sprayed it all away.  Apparently I have a LOT of hair, because there was still a lot of stubble on my head.  

As I'm drying off, I look at myself...there is literally hair stuck everywhere.  All those little hairs that were in the bath are now stuck to my skin.  I start to freak out.  I really am not emotional about this, but it was just GROSS.  I was laughing at how grossed out I was.  Picture me, tiptoeing around the bathroom going, "EW EW EW EW".  Well, picture me with a robe on.  

So, I got in the shower to clean up AFTER my bath.  Crazy concept.  I rinsed off as best as I could, but I still felt like the hair was everywhere.  EVERYWHERE.  I went downstairs to make a snack and I felt like I was dropping little hairs in the same way that Hansel and Gretel dropped bread crumbs.  Do you want to know where lisa went?  Just follow the hairs    _-_-_--_ _- _ _---_ _ _    (that's supposed to be a trail of stubble..)

Then, last night, I was wearing a wrap and it just hurt.  I mean every time I touched it, adjusted it, brushed against something, it just HURT.  So, this morning, I called my mom over and said "let's do it."

She took the clippers, this time without a guard, and we did the rest.  Then, I took an electric razor....one of those triple blade ones, like this: 

And we got the rest.  I think I'm going to have Troy help me with the rest of it tonight.  I'm still a little patchy, and I think I can only get the rest with some good old fashioned shaving cream and a real razor.  

Surprisingly, this has been the most fun part about all of this.  I don't know why.  I enjoyed getting my hair cuts each week, seeing what I liked/didn't like.  I am now really happy that it is all gone.  VERY happy.  I think that was the last big thing that chemo was going to do to me, and now that it's done, I feel liberated.  

So, here's a brief timeline of my last few months with hair. Enjoy...

Before:  

Second Cut: 

Third Cut(My fav):

Fourth Cut:

Today: 

Update

I figured I owed an update, even though not much has changed.  Well, besides the hair.

I had my second round of chemo on Thursday.  Mom and dad came with and saw what it was all about.  I got really good news from the doctor.  He said that my counts were so great that I don't have to alter anything.  I can do whatever I want and see whoever I want.  ALSO-I don't even have to go in for blood work this week.  That was a shocker because everyone that I've talked to has had lower blood counts.

The doctor said something to me like, "Well, some people wonder if the chemo is even working if they have counts like yours..."

Well, I didn't think of it that way--except now I am.  What if it isn't working?  Thanks, doc.  Now you have that in my head.  Just kidding.  He said it just means my body is a bit more resilient to the meds, which I guess is a good thing.  However, he did comment on the hair.  That was a humorous conversation.  We were sitting in the office, and...

Doc: So, you still have your hair?
Me: Yeah, I was kind of hoping to hang on to it until Sunday, haha (nervous laughter).
Doc: Yeah, I wouldn't count on it...I give it two days.
Me: ......
Doc: <shrugs>

Fast forward 24 hours, and the hair was coming out rapidly.  So, I had my mom shave it.  I let Marie watch.  This was partly because I had no choice ( I wasn't going to hide), and partly because I thought it might help to make it "funny".  I think it did.  We set her up in a chair in the garage and just laughed at my hair coming off.  If you know me, you know that I find hair gross.  I hate shedding in the shower, I hate cleaning hair brushes...just the thought of hair, everywhere, grosses me out.  This was why I shaved it.

I'm going to post the pics here, but don't laugh at my face...I was giving my grossed out face...at the hair on the floor, not the lack of hair on my head.  I'm actually ok with it.  Much easier to manage.

  

Before....

 After...

Marie watching...

So, anyway--that part is done.


Saturday seemed to be my "blah" day.  I didn't do much.  In the morning, we took Marie sledding.  She had fun.  She went down three times, but then I got too cold.

I stayed in all day prepping myself for the big game.  Sunday was my dad's annual Super Bowl party.  We had a big discussion about whether or not to have it, and I insisted that he throw the party despite my recent "hiccup".  I figured it would be good to see everyone and keep things as normal as possible.  For the most part, I was happy with that decision.  I was happy that we had the party.

I did try the wig.  Not so sure about it, though.  I was hyper aware of it the whole time.  I can still see the areas where my bald head is sticking through, and I'm not quite sure how to wear it yet.  I'm sticking with the wraps for right now.  I'm going to make an appointment this week to get it styled and get another wig so that I can try them instead.

Marie had so much fun.  She was able to see her friends.  When they got here, she literally threw her arms around them and said "These are my best friends." She was a little diva the whole night, it was pretty comical.  I was so glad to see her have that much fun.  She's finally at an age where (for the most part) she can go off and play with her friends and we don't really have to worry about her. So, I was able to sit and lounge and watch the commercials...I mean, game... and she was able to play.

Scatter-brained as usual, but doing well.  :)