Mouth sores!!!

Oh yeah.

Awesome.

My tongue hurts.  It feels like strep throat in my mouth.  I can’t even really talk.

But, I promised my son I would play Legos with him and I actually did it for a good ten minutes.  That is a big deal.  To show what a great Mom I am (ha ha) I have to tell you that even at my best, I do not enjoy playing Legos.  Blech Legos.  But it means a lot to my kid so I fake it till I make it when I can…and it made him really happy.

So, I played but then the oncology nurse called (BTW she called within 10 minutes of me emailing my oncologist with my concerns; Seriously, my oncologist ROCKS) and filled me in on how to treat my poor sore mouth. And I got a Lego reprieve. Apparently this mouth stuff is a 10 day effect of Adriamycin and it is indeed ten days since my last chemo.  I got some rinses and whatnot but what helped the most was a good old pain killer.  Next time they will give me less of The Red Devil.  So that’s kind of good.  Silver linings.

In other news, I am looking for a summer camp for the little guy for the week of July 8.  I have him on two wait lists.  I actually cried to one of the camp customer service people and used the chemo card and I wasn’t trying to be manipulative or anything.  I’m just so upset that I have to farm my kids out so they are not stuck hanging out with terrible me.  And talking about going to get chemo makes me cry anyway.  Anyway, my kids have been going to this particular camp for seven years… that’s pretty loyal in my book so I am hoping the camp can help me out.  I found an awesome camp for the eldest that week in which he goes to a different animal themed locale every day: a horse ranch, an aquarium, a zoo, etc.  I can’t find anything like that for the youngest that doesn’t have a waitlist.  I am getting frustrated.  Let me know if you have a lead…he’s going to be a third grader.  He needs to be in camp that week.

We are hanging in there as always.  And I am glad to be 41.  Very different from last year.  Although last year I was in Paris without my children so that was good.  Still, last year, I was bummed to be turning 40.  I can tell you right now, that feeling will never happen again. I also don’t think I will ever be without my children again on my birthday if i can help it.  Breast cancer has put all that into perspective.  Every year from here on out is a gift.  And when I blew out my candle tonight my one and only wish is that I get to blow out another next year, surrounded by my three wonderful boys.  I just want to be 42.  I just want to be 48.  I just want to be 50, 57, 63, 100!  I promise you, TIME, it’s what I want.  In fact,  it’s the only thing I will ever wish for again.

I came home from chemo on Tuesday and sat on the couch and pulled my hair out in handfuls.  I put the hair in a bowl.  It took some time.

It didn’t hurt coming out.  It just…went.

I had some fringe for a couple of days around my temples and my sideburns stayed a couple of extra days.  It was funny.

I now have this fuzz left all over my noggin.  Like duck fuzz.  It’s funny.

I was worried my head was going to be dented and bumpy and ugly.  But it’s actually quite round and smooth.  Not at all the denty mess I was expecting.  And my scalp is very white.  I do have some spots and freckles and moles and things but it isn’t unattractive.

Now I know something I never wanted to know.

I have a nice shaped bald head.

I think the best thing is that it all happened in steps.  Before the surgery, my hair was past my shoulders.  That was cut to a bob after surgery when it became apparent that brushing long hair in my new state would be difficult.  Then three weeks before chemo, I got a short pixie boy cut.  People told me I look like Ginnifer Goodwin.

My scalp began to itch a few days after chemo and I was done.  I woke up one morning and my husband and I buzzed it to about an inch all around.

I think it was good for the boys to see it go in stages.  I know it was good for me to do it that way.

How vain, right?  How vain!  It’s just hair.  Who cares?

I freaking care.  I care.  I loved my hair.  I have been obsessed with my hair.  My hair has been a full time job and it is a part of me.  A huge part of my identity and it would be an absolute charade to pretend otherwise.

I really enjoyed pulling it out.  I enjoyed taking charge of the whole thing.  And now it is gone and I am ok.

But you know, even now, a newly bald head is tricky to care for.  Because there are weird dry patches and something called sebum (ewwww!) and the skin itself is quite vulnerable.

So here is what I have been doing to take care of my poor sweet round head.

In the shower, first I exfoliate with a nice honey scrub, then I wash my whole scalp with my fancy pants Brazillian Blowout Shampoo because it feels nice and smells like oranges.  Then I condition it with the fancy pants Brazillian Blowout Conditioner for the same reason. Perhaps i should save that fancy pants stuff but the smell is really comforting so I am using it.  And after all, who doesn’t like an orange scented head?  After all that, I moisturize with Egyptian Magic, a cream that was recommended by my new friend Becky from my breast cancer support group.  I am trying to avoid moisturizers with parabens and all that bad stuff and the Egyptian Magic is olive oil and honey and beeswax and stuff.  I just rub it right in.  I sleep with a cotton cap at night to keep my head warm and comfy.  I remoisturize whenever I feel the need.

I have not gone out uncovered yet but my understanding is that I should wear a good sunscreen (which is tricky since I am allergic to most sunscreen) and just keep moisturizing.

I am hoping that eventually my fuzzy head turns into a shiny head.  We will see.  Becky also said to sit outside for 5 or 10 minutes a day without suncreen to build a base tan on my chrome dome but I’m staying out of the sun for now.

My scalp still hurts so I’m just going to baby it awhile.

And I am enjoying messing with wigs and scarves and hats and figuring out what works for me.  It’s going to be months of baldness, I might as well take charge.

I also went to a “Look Good, Feel Better” class in June.  The American Cancer Society does a nice job with this.  I received a tote full of very nice makeup that I have actually used quite regularly (my favorite is this awesome blush stick by Shiseido, I will buy one when this one runs out, it’s that good!).  I learned some make up tricks (drawing on eyebrows will be coming soon I think!  Whooppie)! I did not know and though I don’t normally wear a ton of makeup, I have found the new “Look Good, Feel Better” philosophy helps.  I may be bald and swollen from steroids, I may feel like absolute poop… but a little lipstick and eyeliner actually can brighten my entire outlook when I need it.  Maybe just a little.

I never knew what a vain person I was until I got cancer.  Or maybe it’s just that I feel so bad that I only have one way to go.  Regardless, it’s working for me.  It’s getting me through.

Makeup and a lot of moisturizer.

People, I can not tell you how important it is to have an oncologist who listens to you.  My husband and I met with her the evening before the 2nd treatment and gave her the lowdown of our first experience.  She made some adjustments and they seem to have made a huge difference.

Don’t get me wrong, I still got nauseated.  But it didn’t hit me until yesterday, day 4, instead of day 1.  I have not been as weepy or as angsty.  I have not been crazy talking and mean.  I have been really, really, really tired.

Like REALLY tired.

Most of my hair fell out on Wednesday.  I still have wispy pieces that are holding on so I kind of look like Gollum.  I am considering shaving the remainder but have heard about itching and irritation and I really don’t feel like dealing with that on top of everything else.  My head itched like crazy for two weeks before it all came out and it has been a relief to be itch free for a couple of days.  I have been wearing a lot of hats.  Wigs are too hot, itchy and uncomfortable.  I don’t think I am going to be a wig person.

I had some stress.  Some adoptee stress that was purely my issue.  My birth family was in town and my mom is here helping out and even though it has been six years since my reunion, my two families have not met.  And to be honest, I am happy that way.  I was getting very stressed and weepy about the prospect of a meeting the day after I had chemo and we found a solution that worked for me.  I don’t know how well it worked for everyone else but it worked for me and it was what I needed and it relieved a great deal of my stress and anxiety.  And even now it seems crappy of me to feel this way as a 40 year-old grown woman but it is what it is and I could not deal.  I have spent most of my life trying to please everyone around me and it was nice to be nurtured.  I need a lot of nurturing right now.  I am not even close to being as strong as people keep telling me I am.

This is a hard road to walk.  I can feel myself disappearing.  I look in the mirror and I don’t see me.  I don’t know what I see anymore.  I am just putting one foot in front of the other and hoping I make it out with some kind of semblance of myself.

Three months ago, I was at Disneyland.  Where am I now?

I’ve been feeling really good the past couple of days.  Still tired, but good.

And all I can think is that this is a gift that I need to savor.

The bad begins again on Tuesday but today I feel good and that is my focus.

Someone asked me how I am feeling and that is what I told them.  Today is a gift.

I cried a little when I said the words.

Today is a gift.

There is truly nothing like having the wind knocked out of you to make you appreciate the gift of being healthy.

And people, I am healthy and strong and cancer free.  All this I am doing is in order to give me the best chance of keeping me this way.

I am looking for the gifts in my life.  My little boys wanting to spend time with me.  My dear friend telling me she loved me today.  An old acquaintance sending me a card telling me that her family keeps me in their nightly prayers. My husband holding my hand and making me laugh out loud on the sidewalk. Gifts.

Today is a good day.

All the complaining.  Bellyaching.

Now I understand that many blog for therapy.  They just want to get it out there.  I do that too. I know I do.  But a lot of blogs just piss me off with all their first world problems.

But guess what?

This is going to be a complaining post because I have had one heck of a week.

The only positive point to this whole thing is that I don’t remember much of it.

I was mostly upright on Wednesday after chemo.  I functioned.  I was a little nauseous but I held my own.  We even made it to our favorite comic book store.  I even stopped at a bakery and got my son his favorite bread.

Thursday was worse.  I made it to PT.  I made it to acupuncture by the skin of my teeth.  I drove but I now realize I shouldn’t have been driving.  I was not safe.  I had major chemo brain.  I was in a fog.

I ate a McDonald’s cheeseburger that day.  that’s how crazy out of my mind I was.  I picked my kids up from school but then I yelled at the little one for being a sasafrass when he saw my McDonald’s cup and started bitching that I didn’t get him any.

We got home and I fell apart.  The back of my head got all swollen from the steroids I was taking.  I freaking hate steroids.  Thank goodness for icepacks and painkillers but then I fell asleep and got behind on my nausea meds…and then I was in a bit of trouble.

Friday….Friday. I slept all day.  I did not get out of bed Friday.  And people kept calling.  And for some reason, even though my mom and my husband were in the house, the boys kept waking me up trying to get me to talk to people on the freakin’ phone!

“I DON’T WANT TO TALK TO ANYBODY!!!!  LEAVE ME ALONE!!”

Great mom moment, eh?

Saturday, I was mopey…and still nauseous.  “Leave me alone.” I whispered quietly, “Just leave me alone.”

Sunday I felt better but then I cried all day because I realized how awful the past few days had been.  my memory of them is mostly blurry, muddled, miserable.

Monday was better but now I began to feel fear.  I have to do this all over again in a week.

I called the oncology nurse and complained about my nausea which she assured me would dissipate soon.  “Suck on hard candy.” she suggested.  I asked her how people do this.  How they drag themselves back in for another treatment.  She said they just do it.

I will do it.  But man!  This is really, really hard.

Apparently the first few days I speak nonsense and insult my family members arbitrarily.  I have no recollection of this.  Apparently, my sparkling personality turns a bit dark on chemo brain.

At one point, my husband was trying to get me to watch this movie with him.  I kept saying  “I DO NOT WANT TO WATCH THAT MOVIE!!!!”.  repeatedly.  And he wouldn’t listen!  And he kept insisting we watch it and I was getting more and more frustrated and teary and panicy.  Why was he going to make me watch a movie I hate?  Why did he want to torture me?

He backed away when I really started bawling.  He looked confused.

It turns out that while I thought I was saying, “I do not want to watch that movie.”  I was actually saying, “I want to watch that movie with you!!!”

Uh…yeah.  That is just screwy.

So of course husband was perplexed at my vehement reaction to him turning on that movie especially since I was insisting I wanted to watch it with him!

What can I say, my brain is sensitive…and my husband?  The man is a saint.  A freakin’ saint!  He is the glue holding us all together.  Someone needs to give that guy a million bucks.  Thank God for him.  Seriously.

What happened is not too unusual.  I used to do that kind of stuff when I was a kid in my sleep.  One time, I walked into the pantry and pulled out a box of pretzels and walked into my brother’s room.  I remember him asking me why I was holding pretzels at 9:30 at night.  I insisted I was not holding pretzels.  My parent found me huddled on the floor cradling the box in my arms all the while insisting I had NO PRETZELS!!

I am weird.

This has been a tough week.  Today was better.  Now my scalp is itching and when i itch it, a few hairs come out.  I still have a full head of hair but it will be gone soon.  The oncologist predicted day 15 from the first chemo.

I hope this mean the chemo is working.

Itch. Itch. Itch.

My hair, whatever, I am ready to buzz it.  I am so over it.  And I am sad.  But I will survive to fight another day.  I’m already wearing headscarves.  I tell people I’m pretending to be bald.

What are they going to say about it?

Three more rounds of AC chemo.  I hope I keep my head.