How I've changed in the last few months

Note:  The different font sizes is driving me crazy.  I can't fix it.  Please don't think that I don't take consistent formatting seriously.  Perhaps the most frustrating part is it looks all the same in the draft mode.
 
These off-treatment weeks always sort of lull me into a false sense of normalcy.  I always feel pretty good and if it wasn't for the fact that I had no hair, life is almost normal.  Oh, and we have this awesome service where friends drop off meals.  It's magical.  Although for some reason my insomnia has been pretty bad this week.

As I was reflecting on writing this post, I realized that in many ways I haven’t changed that much, I’ve just become a little more extreme.   Which might worry some of you that know me very well.   How have I changed?  Let me count the ways:

1. I thought I was forgetful before…what was I talking about?  I’ve been pretty out of it since Belle came.  And then I started chemo and it got that much worse.  I feel the impact of this the most at work.  Fortunately I work with awesome people who can keep track of things when I forget.  And because they're my friends, they give me a hard time about this.  And every now and then I’ll remember a random nugget.  Also, I owe so many people thanks for cards, calls, flowers, FB messages, etc.  I think of writing you a quick note, but it's usually not when I'm around a computer.  So please know from the bottom of my heart that I appreciate every card, email, FB message, text message, etc that I get.  The lack of a response is definitely not personal.     
2. I get angry much quicker.  Y’all remember the race director interaction.  Well, there was another interaction at the Oncologist’s office with a scheduling woman.  The details aren’t important but this woman shouldn’t be in customer service.  Oh, and there was the interaction with the medical assistant in my plastic surgeon's office.  She wasn't unhelpful, she just had no idea what was going on.  I was already a little on edge about that visit because of my previous visit with him.  Anyway, if you’re not going to be helpful to me (no matter what your role is), I apologize in advance because I’m going to give you a piece of my mind.  And then I’ll make it my mission to try and get you fired.  Well, maybe not, mainly because once I’ve ripped you a new one I don’t really feel like wasting any energy on you anymore.  But I’ll wish that I could get you fired.  Before I’d at least try and charm you a little bit longer until it was clear you weren’t going to be helpful and then I’d get pissed. 
3.  My bullshit meter is very low.  In line with the previous one, this has more to do with the people who came out initially in support and wanting to help and have been AWOL since.  I know not all of these people were sincere, but a few did seem sincere and they've just disappeared.  I also realize that everybody's dealing with their own lives.  I try very hard to not waste time or thoughts on these people--they're not worth it and there have been so many other people who have totally stepped up, that I try very hard to focus on that.  But you know what? It would be nice to go to a movie, and when you offered to take the kids anytime, which was helpful because my kids knew who you were, I really appreciated that offer.  Unfortunately, you have ignored my emails to do these things and that hurts my feelings.  This really only applies to a few people and again, I wish I didn't spend as much time thinking about it as I do sometimes.  Then sometimes I think, "maybe they're avoiding me because they read this blog and they've come to the conclusion that I'm a narcissist."
4. I have become a lax parent.  I hope my children don’t end up as out-of-control brats as a result of my lax parenting, but my parenting has become more lax.  I pick my battles.  That being said, in many ways I yell more at the girls because I have less patience, but fortunately it doesn’t seem to really phase Belle anymore, who used to be more sensitive.  Maybe I’m just “cranky mommy” in her head.  Addie's pretty laid back, but she has her moments too.  I always feel better when Aaron loses his patience too.  Then I don’t feel like as much of a monster.  What was I talking about?  So when I’m not being a monster, I’m more likely to give in to things.  I think this is more Addie-specific because she’s getting to the age where she doesn’t like the word “no” and she’s way more vocal about her displeasure than Belle was.  Addie was such a happy, easy baby that I knew the moment she started having tantrums I would look at her in puzzlement.  She's not the one that’s supposed to make a fuss--that's Belle's role (Belle, if you're reading this 10 years from now, you were a challenging little girl.  It was great, exhausting and infuriating. I love you!).  I have a feeling she’s going to be more outspoken than Belle.  I can’t imagine where my girls get this from.  Again, I digress.  I could care less at this point when Belle is potty trained and Addie can have her pacifier as long as she wants it.  My point is I’m more likely to give in to things so the girls will stop shrieking.  Please.  Just.  Stop.  Crying.  
5. Real life “problems” don’t phase me anymore.  This one is more work related because that's where I spend a lot of time and it's not pre-schooler or toddler drama.  I'm also going to be a little vague here because I know of some co-workers that read this, but I might not know all.  I'm less phased by the daily drama that happens in the day to day.  I like listening to it still because it's a good distraction, but my goal right now is to get through this whole thing and not get fired.  I do what I need to do and otherwise my head is elsewhere.  You want to do another re-org?  That's fine.  Do I have any questions about this?  Not particularly.  You want to complain about something that is part of your job?  Fine.  I get mad about things that happen, but most of the time it doesn't last.  Plus, despite some qualities that my co-workers dislike, this place is still a million times better than my last place.
6. You thought I was moody before???  Bottom line, I have good days and bad days.  One day was kind of rough as I thought about the looming surgery.  But the next day I felt better. What a difference a day makes.  And tomorrow, who knows?  A lot of the time (especially when I’m at work), I feel like my old self.  I guess my co-workers could speak to this better than me, but work has been such a nice distraction that I can’t forget about everything else and just focus on work when I’m there.  Plus I have funny co-workers who like to make me laugh.  And I like to laugh, so it’s win-win.
7. I’m more thankful.  I am thankful for so many people--Aaron and the girls, my parents, Aaron's family, old friends and new friends that have been so supportive and everybody that's sent me cards or emails or signed up to help.  As difficult as treatment is, I'm also thankful it was caught early.  With any luck, I won't ever have to go through this again, although I have my moments where I worry about it coming back, and I'm not sure that's ever going to go away. 

Lesson learned: Always keep the Kindle charged. Just in case.

I had my third(!) chemo treatment last Monday.  I felt more tired than I have been with previous treatments but was starting to feel better by Friday.  Then I woke up Saturday morning and felt strangely similar to how I had when I had pneumonia a few weeks ago.  So I called the oncologist on call and she sent me to BI`s ER.  I was there a few hours and was bored to tears.  Aaron stayed with the girls because we had plans to see friends.  Also, it seemed silly for Aaron to come with me.

If I haven't said it previously, I don't like hospitals.  Actually I loathe them.  I couldn't get out of there fast enough.  While my section of the ER is pretty quiet, they wheeled me through the rest of the ER on the way to my chest x-ray and it freaked me out.  The disease was everywhere. You are aware of how rampant MRSA is in hospitals, right?

While I was there I finished a book and there was no cell service.  I remembered to bring my Kindle, but it wasn't fully charged.  Also, it didn't occur to me to open it until I was almost ready to go, so it wasn't really a problem.  Still, after not watching it for many years, I have now become addicted to the Real World again.  I'm not ashamed to admit it, even if I should be.  However, lesson learned: you never know when you're going to end up in the hospital, so keep the Kindle fully charged at all times.  So I can spend my next hospital visit getting more caught up on Real World.

The good news is that it wasn't pneumonia.  I have just become a hypochondriac. Kind of a random, boring update but these posts can't all be deep thinking, folks.

The hair loss post (plus other ramblings)

Quick update: As many of you know, I had pneumonia a few weeks ago.  I was supposed to have my third chemo treatment on Monday, June 10 but my levels (things like white blood count) were borderline and because I was sick the previous week, they were worried that I hadn't fully recovered, so chemo was postponed to this Monday, and my last treatment, scheduled for June 25, was moved to July 1.  To say that I was bummed out about this is an understatement.  For now, I'm enjoying not feeling like crap and enjoying eating as much as I can, although I find I still don't have much of an appetite. I just don't really get that hungry these days.  It is a nice feeling to occasionally feel hungry.  I miss that feeling.

So.  The hair.  It started falling out on May 29 right on target (16 days from the first treatment).  It wasn't falling out quickly, but there were clumps and I had Aaron shave it the next morning.  It took much longer to shave off than I would have thought.  He said I look very Sigourney Weaver-ish in Aliens 3. That made me feel better because she's pretty bad ass.

At first I was relieved that it was over.  Now for the most part I wear scarves.  I've worn my wig a few times.  I get more used to the wig the more I wear it, but I'm always worrying that it's crooked and it's too distracting for me, so most days I wear the scarves.  The wig's also hot, so apparently I should have timed this whole cancer thing for the winter.  The scarves at easy, but they're like a huge beacon that screams, I HAVE CANCER EVERYBODY.  I find that I don't make eye contact with strangers (and acquaintances now that I think about it) anymore because I don't want to feel them sneaking a look at me.  At home I wear nothing and it's the most comfortable.  Sometimes I forget that I'm not wearing anything and I've left the house bald.  Then I usually run back in and I get sort of mad at myself for feeling so self-conscious. At treatment I don't care how I look because I'm with my "people".

It's taken me a while to write this particular post because I've been hemming and hawing about posting pictures--me without my hair, me with my wig, one of all my scarves.  Bottom line, I either can't be bothered to take the picture or I hate the pictures that have been taken.  At some point I might update with pictures, but in the meantime, use your imagination.

The other thing that's sort of weird is the hair that I still have is growing.  I've definitely lost a good amount of hair, but I don't look like a cue ball.  I wasn't expecting that.  I thought it would all fall out.  I don't regret shaving it off because it wouldn't look good and the constant hair loss would be too stressful, but I sort of feel in limbo right now.  Should I trim it (I think the wig and the scarves are more comfortable with less hair) or should I just let it start growing again?  I'm leaning toward the former.  A few centimeters of growth will come back pretty quickly. 

At this point all I know is that July 1 can't come quickly enough.  Two weeks and a few days.  Technically I still have to get through that week too, but once the treatment is over, then I can celebrate that.  And then by July 5th or so I'll hopefully be feeling pretty back to normal.

There's still so much left, and I'm sure much of July will be spent dreading my surgery and enjoying my last days with my boobs.  I already dread the surgery but I push it out of my mind most of the time because for now I can only focus on the chemo treatment.  One thing at a time.  The next chemo round is supposed to be much more tolerable, so that expectation has already been set.  And the radiation at this point feels like it will be a cakewalk. 

This whole experience continues to feel so lonely.  The support we've gotten from everybody has been amazing, but this is still a solitary journey.  Aaron takes the brunt of my tears and has been beyond awesome.  I honestly don't know what I would do without him but I know this is very hard for him too.  If there is something positive to take from this experience, it's been meeting all of the women who are either going through treatment or are survivors.  Many of the survivors have a very strong feeling of wanting to "pay it forward" and offer their support to other women that are currently going through treatment.  I can see feeling that way too at some point and I look forward to that day.

Musings after the 2nd Chemo Treatment

For some reason it feels like it's been a long time since I last posted, but I guess it hasn't been that long.  My interaction with the Race Director went nowhere.  His response to my post discussed how he's a cancer survivor and all the great things he does to support the cause.  Good for you.  And clearly, I should have put "deferring the race" higher on the priority list.  Thanks, I'll remember for that for next time.  He ended up deleting our FB interaction.  For everybody that sent indignant letters, emails, to him and the race sponsors--thank you very much.

My hair is gone.  There will be a separate blog on that, but I've been stalling a bit.  I know I don't need to post pictures, but I sort of want to.  And yet I don't.  So I'm thinking too much about that part.  It isn't so much the baldness I don't want to show, I just generally hate myself in all pictures and lately I just feel like I've aged 10 years in the last two months.  Again, I'll write more on that.  Hopefully sooner rather than later.

So, the second chemo treatment is done.  I've heard that some people feel a let down at the end of treatment round, even chemo treatment.  I can potentially see this at the very end of the final treatment (which will be radiation for me, but it's not really the end because then I have my Tamoxifen years ahead of me), but I can't possibly imagine being sad about the end of this round of chemo.  I hate it.  The actual chemo day is pretty uneventful.  I mainly hang out by myself--my friends at work have put together some awesome chemo bags with magazines and goodies, so that passes the time away.  It's the days after that suck suck suck. 

My latest treatment was the day after Memorial Day, so my recovery has felt a day delayed since last time. My oncologist tweaked my anti-nausea meds and on Wednesday I actually felt pretty good.  Great, even.  I felt so good that I ended up overextending myself and ended up passing out from exhaustion at around 8.  Then Thursday came and it was like it was the first round all over again.  It didn't help that I have this cough that I can't shake (more on that in a sec). 

What's bad about it is hard to articulate.  I'm not lying in the bathroom in a fetal position, I just feel unhealthy and blah.  I have no appetite (which is unusual for me), and I'm nauseous and those two sort of become a self-fulfilling prophecy.  I force myself to eat but I can't taste anything.  During the chemo weeks I have a metallic taste in my mouth all the time (although that fades a little in the "off chemo week").  And now the back of my mouth feels like it's been burnt, which makes food even less enjoyable.  It has since been confirmed that I was developing mouth sores, which is a possible chemo side effect.

Even as I entered a chemo-free week, I wasn't feeling much better.  I worked out Monday morning because I felt well enough, but it didn't go well.  I couldn't finish the class Monday morning because I felt like I was going to throw up.  It was like I had heat exhaustion.  I am not good at being weak and tired.  And after continuing to feel like crap on Monday night, I finally caved and called my oncologist.  She scolded me over email and had me come down to BI this morning.  It turns out I have pneumonia.  No wonder I wasn't feeling good.  Even though they attributed the nausea from the past two days to the pneumonia rather than the chemo, they still kept me around and gave me some anti-nausea via IV.  So that's how I spent this afternoon.  Honestly, just having a diagnosis and a confirmation that I wasn't just being weak was very reassuring.  And yet I'm disappointed that I'll probably barely recover from the pneumonia before I get to feel crappy again next week for my 3rd treatment.

Even last week the idea of having to go through two more treatments felt very daunting.  I can see why people skip their treatments.  And then I keep trying to tell myself I'm halfway over with this part of the treatment--there's only two more.  And then I have a month off to celebrate life (and my birthday!) until the next milestone--the mastectomy.  Which I can't think about right now.  Many cancer survivors you just have to take it one day or even an hour at a time and I know what they mean.

Last week in particular felt very dark.   Every time people tell me how great I look or how upbeat I seem, I'm surprised.  I realize I'm perkier than most, so even if I'm low on the perky level, I'm still perkier than a lot of people.  I think I unintentionally save a lot of my angst and sadness for when the girls go to bed.  During the day I was pretty good at compartmentalizing and I could hold myself together, but once the girls were in bed, I would just lose it over this goddamn chemo and what it's doing to me.  I think some of this last week was attributed to the hair loss.  But again, more about that in a subsequent blog.

Well, another upbeat post!  Until next time...