Work the Scarf girl - Work It!!

So there I am, in the drive thru at McDonald's - which, by the way, tasted awful before chemo, on chemo it tastes even worse, anyway - I'm ordering and I realize that I forgot one of the children's drinks so I get out the receipt, right there at the window, to ask the simple question "is the drink for the happy meal included or charged separately?" at which time the worker who wasn't looking at me yet but was obviously annoyed I was holding up the line, gives me a resounding "No!" then looks up and sees me - suddenly she is shoving a child size drink in my face with this huge smile on her face telling me it's ok - it's ok - no problem no problem - while I'm trying to hand her a dollar for my mistake.  I take the drink and pull away baffled - thinking "what the chicken?  how passive aggressive is that?" then I realized I was wearing my scarf.  Aaaahhh - the familiar ' oh my God she has cancer and I was angry at her just give her anything she wants so she will go away' scenario.  How quickly I forget.

So it was a quasi normal day today, play date at the park which my girls thoroughly enjoyed - and I waded through the once again uncomfortable 'getting to know you' chit chat with a new mom while we both tried to ignore the fact that I am bald wearing a scarf, albeit, a FABULOUS rhinestone embellished pink scarf today.  Conversation eventually made its way to me telling 'my story' - the abridged version of course.  Why do I feel compelled to leave parts out just because I know it will make people even MORE uncomfortable??  Arg. 

Had to get my blood drawn today, which I do weekly now at the local lab then results are faxed down to CTCA.  My girls come with me, and Ginger sits on my lap as they put the needle in and draw blood.  Madeline got to come this time due to spring break and she announces as the tubes are filling with blood "blood is blue in your veins but it turns red when it comes out of our body".  Yay Mads!!!  Woot Woot!  I'm eager to see what the results are - see where the Nulasta shot has placed me with my WBC count.  My mouth irritation is at an all time high today - just all around sore, consistent horrible taste in my mouth, and the only thing that stops it is to fill my mouth with ice cold water.  Doesn't lend itself to a lot of conversation time, which I'm sure my husband is secretly grateful for tonight. :-) 

I'm watching my kids process this new round of chemo for me- Ginger will bring up the hair loss at least once a day, and for some reason she thinks that she too will be asked to have her hair cut off. I reassure her that no, she will not lose her hair, nor does she have to cut it.  She seems so relieved when I tell her this.  And she likes to rub my head, a lot.  And she likes to kiss my bald spots. 

Madeline is processing this so differently - it's like I can see the little wheels spinning in her head.  I had to take Brittany to craft night tonight, so PJ fixed dinner for the girls and I guess the following exchange happened:

Madeline: "Going to Phoenix sucks Dad."
PJ:  "Well, I suppose it can, but I don't think we should really be saying the word 'sucks'.  Let's only use that word at home for now, and only in certain circumstances, when it's appropriate - ok?"
Madeline: "Chemo Sucks.  Is that appropriate Dad?"
PJ:  "Absolutely Madeline.  That is absolutely appropriate."

Yea, I think she gets it way more than she's letting on.

While I was waiting for Brittany at her craft night, I decided to walk through our new Trader Joe's here in Prescott - so exciting.  (it doesn't take much up here) Anyways, it was lovely to just stroll through the store and really look at everything at my own pace.  I happened to run into someone I knew who greeted me with a rub on the back and a 'how are you feeling?" to which I respond "I'm fine thanks - how are you feeling?"  I wasn't being a bitch about it, but I think I secretly had bitch in mind.  They are legitimately concerned for me - and I react like some defensive - angry - bald person.  At first as I dissected my behavior I thought well, I have been going through chemo although in different forms for the greater part of the last 3 years, I've had shitty days all along and because I had hair, no one knew.  Now that I don't have hair, suddenly everyone wants to know how I feel.  But in reality, now is different than the greater part of the past 3 years.  My cancer has once again spread to my bones, so this is different I suppose.  More aggressive medication for a disease that is progressing - it's totally OK for people to ask how I feel.  And I don't need to hear this question as a sign of weakness - or think I have to answer the question pretending to be fine.  Why do I do that?  I mean, I'm not going to break down into great detail about how the meds make me super constipated and I spend the greater part of the morning feeling like I was pushing a log through a pinhole - although I would LUV to do this just once to get a reaction.  I guess I just don't know what to say.  I don't feel fine - but I'm doing the best I can.  Maybe that's what I need to say.

Looking forward to a quiet weekend, there is supposed to be a snow storm, so we are excited to cuddle with my family and just lay low.  Having my dad and Nancy over for BBQ tomorrow night as the storm rolls in on Sat - it'll go from like 73 to 44 in 24 hours - cool eh?  I know sometimes my dad has trouble looking at me, especially when I look the part like now - and it breaks my heart.  When he looks at me I see the tears well up in his eyes - I need to have a conversation with him though, and remind him that I'm fighting - I'm fighting everyday and not giving up - I feel like he needs to hear me say this to him.  I love my daddy so much.  What a gift that I get to live so close to my family, and see them, hug them, hang out with them - and better yet - my KIDS get to do all this too.  They get to know my whole family - what a gift.  I'm so glad we live where we do, to be surrounded by family who we can talk to, lean on, cry with, laugh with - I am so blessed, my children are so blessed.  It sucks what my girls are being exposed to and the language they are learning, this 'cancer' language - but what they are witnessing, in my home, in my family, in my entire community, the outpour of humanity, is simply indescribable.  What a gift.

Well., I think I gotta go grab the bottle of baby fish mouth - oy. 

God Bless -

Dina