Monday, September 30, 2013

It was better.....for a while

Well, round 2 started out way better than round 1.  I started feeling better on Tuesday after my treatment the previous Thursday.  I felt great for several days.  I even went to Tulsa to see Beth Moore over the weekend which was such a treat!  I was so glad I was able to go with my sweet friend Mel.  We had a great time!  

This evening, I started feeling ill with a cold.  Sinus pain, headache, runny nose, etc.  Shaun came home from work and was sick too.  I'm not sure who got it first and gave it to the other.  My white counts get so low the week after chemo that it was no wonder I got sick.  When I went in on Thursday to get labs drawn, my white count was 0.4 (extremely low obviously).  It's no surprise I'm sick but I sure hope it doesn't last long.  I was on a roll for 5 days feeling really good!  Big fat bummer!  The good news is that the chemo side effects (besides the low white count) were controlled way more this round than they were round 1 and it was so much better.  My Dr. gave me some new meds for some of the side effects I had and they really helped.  It also helped that I actually stayed in bed for 3 days like I was supposed to.  I didn't exactly do that round 1.  

Here's hoping this cold does not last long and I am back to feeling better to have some good days before round 3!  I hope you are all well and healthy!  

Friday, September 27, 2013

On the girls seeing me bald....

Round 2 has been much better than round 1.  I stayed in bed all weekend per Dr.'s orders and by Dr. I mean my actual Dr., my husband, and my mom.  :)  Round 1 I think I tried to do too much too fast so I promised myself to just let my body rest.  It is so hard for me to do that.  I am not a couch potato.  I like to be doing something.  I mean, how many old 90210 reruns can I watch (turns out, a bunch!)  I am definitely catching up on all my TV shows.  I literally stayed in bed Friday-Monday.  I started feeling better Tuesday morning and it improved throughout the day.

My parents had the girls starting on Thursday after my treatment so I didn't see them until Tuesday when I picked them up from school.  I missed them so much.  We decided it is better to just have my parents take them to their house for a few days each treatment because I just don't want them to see me in that condition.  When we're at home, they want me to play with them and I hate telling them I can't.  They love staying at mimi and papa's though.  They seem totally oblivious to everything going on which is all I wanted when this whole thing began.  They are just too little to understand all of this.  I never want them to be scared or anxious so I try to remain as strong as possible for them.

The girls seeing me bald was quite an experience.  We had prepared Julianne a bit.  Originally, I thought I would tell the girls that I was getting medicine to stay healthy and that the medicine would make me tired and would make my hair fall out but it would grow back.  After discussing with Shaun he was of the opinion that if we told Julianne that, she would never want to take medicine again.  I agreed.  So Shaun just opened up a conversation about cutting your hair.  He asked if she had ever seen someone without hair before.  She said "yes, babies!"  Shaun showed her some pictures of some bald men and then showed her some pictures of bald women and said that even women can cut all their hair if they want to.  We then moved into telling her that I was going to cut all of my hair off and that I would get to "play dress up" with wigs, hats, and try a bunch of new things.  She really was fine with it and said "I don't care who cuts their hair as long as it's not mine...I want Rapunzel hair!"

Claire saw me first.  I was wearing a hat and she said "why are you wearing a hat mommy?"  I told her I had cut my hair and that it wasn't there anymore.  She said "I want to see" so I showed her.  She gasped and said "Oh no mommy!  Why did you do that?"  I wanted to cry.  She asked me why I did it a couple of times and then went on to something else about 20 seconds later.  When Julianne saw me wearing a hat later that evening she said "did you cut your hair off?" I said yes and she asked if she could see.  I took my hat off and she stared at me for a second and then said "mommy, I think you look nice and I am going to say a prayer that your hair grows back curly because I know you have always wanted curly hair."  This kid melts me. Seriously.  She is the sweetest thing.

It barely phased them at all.  They are totally used to it now and it's only been a few days.  They run in to our room in the morning to see what scarf or hat I'm going to wear that day.  Although Claire did say the other day "mommy, you're hair looks weird."  She's 3.  There is no filter.  The bottom line is that the girls seem to be fairly unaffected by what's going on right now.  That is exactly what I want.  My first thought when I got my diagnosis was the girls.  How would we tell them?  Turns out, we didn't have to.  When I was torn about what to do, something Shaun said just struck me.  He said "babe, we don't even understand it, how will they?"  They wouldn't.  They would be scared and afraid they would lose their mommy.  I won't do that to them.  This whole journey is just to big for them to understand at their age.  That's why I am writing this blog. So I can share my story with them when they are old enough.  I want them to know that I fought so hard because of them.  So I can be here for them for as long as possible.

This all is not to say that anyone who shares their diagnosis with their small children is wrong.  This is just what is right for our girls.  If the girls were a couple of years older, it would probably be different.  After speaking with their school counselor and discussing it with each other at length, it's the decision we made.  It's working for us.  I'm trying so hard to keep life as normal as possible for them.  So far, I think it is.  I can't ask for more than that.


Friday, September 20, 2013

The day I said goodbye to my hair!

My hair started falling out a few days ago.  This has been the thing I've been dreading the most since I knew I had to do chemotherapy.  I got a head start on the hair loss by giving cancer the bird and chopping my hair off right after my diagnosis.  I actually really loved the cut and thought maybe I should have done it sooner.
I was struggling with whether to keep my hair for as long as possible or just to shave it.  After it starts falling out, it is very emotional to watch.  At first, it was just a hair here or there, and slowly it has turned into me pulling clumps out.  So, I grabbed the bull by the horns, called my hairdresser, and told her I was ready for her to shave it.  I figured that it was going to all fall out sooner or later so there is really no point in delaying the process.  Waking up to a pillowcase covered in hair is not my idea of a good time.  My hairdresser graciously offered to come to my house to shave it for me so I didn't have to go to the salon.  I had her come over the evening of my birthday because why not?  I already had chemo that day so why not make it a big ole party?  My good friend Marianne came over to for moral support.

I look terrified in this picture.  I was.
 Here goes nothing....
 It was so weird to feel all of that hair falling down
 While she was shaving it, she kept saying, your head is perfect!  I was worried I might have a  misshapen head or bumps or moles.  You just never know right?  I've never been bald before.
 Getting there
 I should have left it like this for a few days!  Ha!
 Finishing touches
 And done.  It took about  5 minutes.  Marianne kept reassuring me that I looked great.
 Not too bad I guess.  This is one of the weirdest feelings ever.  It was very cold!  

I don't love being bald but it actually wasn't as bad as I was anticipating.  Now I get to bust out all those head covers, scarves, and wigs I've stocked up on.  Take that chemo!!

Thursday, September 19, 2013

Happy birthday to me!

Today is my 38th birthday.  I spent it in a chemo chair.  Definitely won't forget this birthday.  It was a memorable one.  My mom and my friend Laurie accompanied me to the chemo room.  Then, I had a stream of guests flow in to bring me birthday treats and visit for a few minutes.  I thought at one point when there were 5 people there at once that the chemo receptionist was going to kick us out.  She was like "you're really only supposed to have 2 people with you."  I wanted to tell her listen lady, it's my birthday and I'm getting chemo.  I'll have a parade in here if I want to.  But instead I politely said, "they are only staying a few minutes."  
One of my friends brought me a tiara.  I wore it the rest of the time I was there.
My sweet friend Caryn brought us Krispy Kreme donuts.  I ate 2...and wanted more!
 My sweet Marianne came by to wish me a happy birthday and she brought me a new Coach purse.  Love.
 My other friends Jace, Lenette, Jessica, and Lynn came by too but I didn't get pictures with them - boo!

Laurie and I
 Me with my mom.  She has been my saving grace through this.  She is super-mimi!

Shaun brought a cake home for me tonight and he sang to me.  Love that man. 

You know what the year of being 38 will be?  The year I kicked cancer's butt!

Sunday, September 15, 2013

Back to normal

Well, I think things are finally back to normal around here.  Just in time for round 2 this Thursday.  That means 4 good days.  And I'm going to suck up every second of them.

In other news, my hair is starting to fall out.  My Dr. said that most people start to lose it around day 10-14 and I made it to day 17 (yay me!)  It's falling out in strands right now but will probably start to fall out in clumps soon.  I may just take control of the situation and shave it rather than losing it little by little.  It's very emotional and I think it may be better to just get it over with.  I'll keep you posted.

Tuesday, September 10, 2013

Sometimes....

Sometimes, you have a best friend.  Sometimes when you are going through chemo and having what feels like the worst week of your life, you call this best friend and cry and complain.  Sometimes you apologize for being such a downer and she says "don't ever apologize".  Sometimes, you get a card two days later that is pretty and decorated with glitter (because you love glitter).  Sometimes, it puts the biggest smile on your face and you feel better.  Then you thank God that you have had this best friend by your side for more than 20 years.  I love you Randi!

In case you can't read this card it says:  Hang in there-Sometimes the prettiest flowers grow in the biggest pile of shit.

Yes, yes they do!

Saturday, September 7, 2013

An unexpected bag

I went in today to get the last neupagen shot that I needed and when the nurse greeted me she was like "are you alright?"  I said I was fine, just not feeling well.  She took my vitals and then asked me if I had been eating and drinking.  I told the truth and told her not really.  Not eating much at all and trying to drink though nothing tastes good.  My heart rate was 140.  Sitting down.  Doing nothing.  She decided that it would be best that I stayed and got some fluids.  So, what I thought was going to be a 5 minute visit turned into sitting there for 2 hours while this bag of fluids drained into me. It was a green mix that looked a little like Mountain Dew or Gatorade.  It had vitamins in it.  

I think the fluids made me feel a little bit better and I'm going to try to eat more today than I have been.  The shots I got have been giving me some wicked side effects, the worst of which is the joint pain.  It hurts from the tips of my toes to my head.  Hopefully that will diminish in about 48 hours after these shots wear off.  I hope to be feeling better after this weekend.  Round one has not been kind to me.

Thursday, September 5, 2013

The worst day so far

Warning:  Not a happy post.  Today was bad.  Just bad.  And I'm telling it like it is.

I felt bad all day yesterday.  Today was my appointment with my oncologist.  My appointment was at 11:15am.  I checked in and sat in the waiting room.  And sat, and sat.  Finally got called back to my room so they did vitals and the nurse asked how I was feeling.  I just shook my head and started to cry.  I literally have never felt so bad in my life.  New side effects were appearing (3 day diarrhea, headache, sores in my mouth and down my throat, not sleeping, not eating, metallic taste in my mouth so nothing tastes good). Every time I did eat something, I got stomach pains, so then I really didn't want to eat.  I've lost 8 pounds in 9 days.  I'm so dehydrated.  Even water taste different and it doesn't taste good.  My blood pressure was low and my heart rate was high.

I was frustrated by how long I was waiting to see my Dr.  It sucks to be waiting on a Dr. always but it sucks even more when you feel like crap.  I cried and cried in the room.  I'm pretty sure the nurses there think I'm nuts.  I feel nuts sometimes.  The Dr. finally walked in at 12:45.  That's right, appointment at 11:15, he walked in at 12:45.  Don't get me wrong, I love my Dr.  He is awesome.  But he is overbooked and cancer patients tend to need a lot of attention.  When he came in he was so apologetic and told me that he had been running on time until the two patients before me who he "had to give very bad news to".  Then I felt bad that I was so angry.  Someone before me was told they were dying.  My situation could be so much worse. Reality check.

He told me that my white count was 1.5 (very low).  This condition is known as neutropenia and puts you at very high risk for infection.  So, I had to get a shot of a drug called neupagen (and two more over the next two days).  The side effects for this drug can sometimes be worse than the chemo side effects.  It affects everyone differently so we'll see.  Going forward I will get the long-lasting shot (neulastin) the day after chemo.  This should help my white cells boost up faster after they dip.
Neutropenia—A lower-than-normal number of neutrophils (infection-fighting white blood cells) in the blood. It is a common side effect of some chemotherapy treatments. Doctors check the number of neutrophils when they measure the white blood cell count, to monitor the risk of infection. He looked me over and gave me some things to help alleviate the symptoms I'm having.  He said he rarely sees patients that are hit this hard the first round.  I literally had 8 out of 10 of the major side effects of this cocktail of drugs they are giving me.  The good news is that now that we know how my body reacts to the chemo, there are things he can do for me for the next round.  New meds to try to help curb the side effects. I'm praying it works because if I have to do this six times I will lose my mind.

By the time I left the Dr. and picked up Julianne at school, I was exhausted.  My sweet friend took the girls for a few hours so I could rest and then brought them home and helped me put them to bed.  I'm so thankful for my friends during this time.  They've been showering me with gifts, meals, and love.  I have the most amazing people in my life and this whole experience has just made me appreciate that even more.

So there you have it, the worst day so far in this whole chemo experience.  It's only day 7 so I'm sure there may be worse days to come.  I pray there is not.  I will always remember day 7 as the day that almost broke me.  Here's to hoping for better days to come.


Wednesday, September 4, 2013

Spoke to soon....

Well, I spoke to soon about feeling good yesterday.  Around 5pm, I started feeling like poo.  I took Julianne to dance, felt OK when we got there and then by the time we left just felt yucky.  I started having some gut pain/stomach issues.  Warning, I'm keeping this blog real so if you have an aversion to poop issues, don't read this post.  I started to get these stomach pains and realized that it was probably because I needed to go #2.  Only problem, I couldn't go.  I'd sit there and nothing.  They came and went, about every 30 minutes.  I went ahead and decided to go to book club because it was my month to be the hostess.  We went to a local restaurant and I got some soup which was really good and I was able to eat.  I had eaten hardly anything the last 4 days so it was nice to get some food in my stomach.  Only problem was that the stomach pains came back when I ate.  I came home and was up most of the night.

They tell you to take stool softeners when you get chemo because many people get constipated.  I was finally able to go to the bathroom last night but it was the exact opposite of constipation if you catch my drift. Oh. My. Goodness.  Up all night and running to the bathroom is not fun.  I'm still having it today.  I'm dehydrated and have lost about 7 pounds in 6 days.  Not good.  I'm working on getting hydrated and I am seeing my oncologist tomorrow.  I certainly hope he can offer some words of wisdom.  It's hard to stay positive when you feel like poop (pun intended).  Please pray friends.

Tuesday, September 3, 2013

Feeling good

Today is Day 6.  I woke up feeling good so I got dressed and took the girls to school and then headed to the first day of bible study.  I was so excited to get up and get ready and put on something besides pajamas. This is me on the way to bible study.  I was clearly happy.  Tonight, I have book club and I'm hoping to still feel well enough to do that.  I'm trying not to do too much but it is so hard for me.  Life goes on and I have things to do.  Hope you all had a great day today!


Monday, September 2, 2013

Round 1 weekend

Round one has gone okay so far.  I spent the weekend mostly in bed resting.  I had severe joint pain, a headache, a little bit of tummy issues and fatigue.  I had the girls this weekend and Shaun was on long call meaning he was barely home.  My parents had a trip planned for labor day weekend that they had planned a year in advance so I told them to go.  I had some sweet friends who took the girls almost all day on Saturday and another friend took them to her house for a few hours on Sunday for a movie and some play time.  It was great to be able to rest.  Having the girls ask why I'm so tired and why I can't play with them just breaks my heart.  I'm not going to lie, being stuck inside on Labor Day weekend was not fun.  I think moving forward with the next treatments, my parents will just take them the day of my treatment and keep them the entire weekend.  I am not a good rest person.  I don't like to be still and just lay around like a couch potato.  I mean I can only watch so much trash TV.  Any shows you would recommend?  I have Netflix and Hulu so I'm looking for stuff to watch.

It is now Monday and I am starting to feel better.  Day 3-5 are usually the worst which has turned out to be fairly accurate in my case.  Let's hope it stays that way.  Thank you all for thinking of me during this difficult time.