On the Up Side

So far so good this week.  When I woke up this morning and rubbed my eyes awake, it wasn't bad.  That's when I made the connection... no tears in a few days.  When I cry at night, more salt is stuck in my eyes in the morning.  No tears in a few days.  That's a good thing!

I've gotten so many wonderful and supportive cards in the mail.  Some so inspiring and encouraging and some that literally make me laugh out loud (a pickle birthday card Jen?)  ;)  LOVED it!

Last week I had cleaned off the island in the kitchen, tossing the flowers that were passed and putting the cards into a basket that once had flowers.  Then I started fresh with the new flowers having space along with all the new cards.  I never thought I'd be ready to clear off the island again this quickly!  There is barely any space for anything other than the cards.  Maybe its a good thing Jim keeps forgetting to call the furniture store to see if the bar stools we ordered are in.  With all the cards, if you sat at the island now, you wouldn't have any space for anything!

I continue to hear from so many people and receive support from so many places I never expected.  That is so absolutely amazing.  The support I am getting really does make an absolute WORLD of difference for me! 

Yesterday was my one day this week that I don't have anything going on.  That's kind of nice... a busy week! 

Today I'm meeting an old work friend for coffee/snack/early lunch sort of thing before my 1pm appointment at Dana Farber.  I'm looking forward to catching up with Brenda who I haven't seen in a while.  Always loved working with her.  A no BS sort of person and I like that.  Nothing fake about her. 

After meeting with Brenda, heading down the street to Dana Farber.  They offer integrative therapies at insanely cheap prices!  A one hour session is $20.  Yes, $20!  For a massage, Reiki, and whatever else they have.  Today is Reiki, which I have never tried before, but I'm basically open to everything.  And for $20?  Why not try it and see?  I'm not ready for a massage at this point in my recovery, but I do have an appointment scheduled for later this month.  Again, $20!  Can't beat it!

Tomorrow I'm going to the support group at the cancer Support Community.  I'm still not sure how I feel about it.  There is one other person in the group who is under the age of 50.  And a different person is going through her second round of breast cancer but much more advanced.  I'm not sure if this is the right group for me. 

Hard at my age to find people who I can connect with who understand the issues, fears and struggles I have.  Under 40, no kids, cancer.  Different issues than 60's, retired, or even younger with kids.  Not more challenging either way, just different issues and concerns. 

Thursday will be fun.  I haven't seen Jen, pickle birthday card Jen in.... hmm...  That's a tough one.  And a scary one to answer!  Well, we met when we were 18 or 19.  We worked together and went to school together... bombed our Trig final together (not sure who took longer to finish, but I'm pretty sure we grabbed lunch after and we were both out in under 15 minutes!).  But I think we might have last seen each other maybe 15 years ago.  And that's a guess.  Could be longer, maybe. 

Anyway... we are meeting for lunch which will be great to see each other and catch up again.  I'm looking forward to it.

Friday I have another follow up appointment with the plastic surgeon.  I'll get another "fill" in the expanders.  Damn those hurt!  With losing feeling from surgery, I can't feel the needles being put through my skin into the valves of the expanders.  But once inserted, she pushes in saline. 

The expanders are basically balloons, under my chest muscles.  They expand the muscles and skin with each "fill", slowly over however long it takes.  That part varies person to person.  She was able to get in more saline than I expected at my initial surgery, so I looked like I had boobs from day one.  The fill I had on Feb 1st brought me back to at least where I was before my mastectomy, if not a little bigger.  (not sure considering there is still a little swelling from surgery as well). 

I told her I'd be up for going a bit bigger if that's possible.  But the skin can only stretch so far, so we'll see.  At least I did find other bras I can wear besides the surgical ones I left the hospital with.  Those things were HORRIBLE.  And I hated the idea of spending a ton of money on an ugly bra I'd only be wearing for a few months. 

I now have 6 Hanes ugly ass front closure bras.  They look like the tank style sports bras that pull over your head that have very minimal support.  No underwire, no cups.  Just the squish them down thing that can make a uni-boob.  These are slightly V-neck with the five front closure eye hooks, but are still ugly.  And I have to wear them 24/7.  Keep the expanders pushing where they should be. 

Friday she'll check the incisions as well, and make sure I'm healing up alright.  I think I am, but she's the one with the medical degree.  I am slightly concerned with some pink spots.  I don't know if its an issue, healing or the hair dye dripping down on the incision scars.  Guess I'll find out in a few days.

I'm also slightly concerned with a fold I have.  Thing that armpit boob area when your arms are by your sides... the spot that sticks out of bras sometimes.  That spot.  Right by there on my left side, I have a fold when my arms are down.  I'm pretty sure it will go away with more "fill", but its something else I want to ask about.

So I colored my hair again too.  Well, Jim did!  He was so good.  I bought the dye at Sally's Beauty Supply after a long conversation with someone who worked there.  Sunday we mixed it up in a paper bowl.  Jim used a comb he was ready to toss to apply to slowly to my hair.  I think he took 20 minutes to get it all on, trying not to get any on my scalp so it wouldn't stain me at all.  He was so good.  Then he helped me rinse it all out too.  This time its a little bolder and brighter.  But I just need it to last until the 23rd.  18 days until he shaves my head.

And that was funny too!  Not sure why I didn't put it together when he was saying things about the dye staining my head.  Sunday night when we had the Superbowl on, it finally clicked.  Any spots that are on my scalp, will they still be there when he shaves my head?  Will I have a purple spotted head?  He laughed cuz he had thought of that weeks ago and THOUGHT I had already gotten that point.  Nope... a little slow on that part!  :)  Wouldn't that be funny?  A purple spotted head?  Not that shaving it won't be traumatic enough!  Oh well!

Chemo starts up a week from today.  I'm absolutely terrified about it.... well, not completely.  I don't want to be sick but more specifically, I don't want to LOOK sick.  I know my doctors will give me plenty of meds to manage all of the side effects that I can come up against.  I already have 3 prescriptions waiting for me at the pharmacy which would handle the effects for me once I'm home.  I know I have to buy Claridin for the bone aches.  I'm not so scared about all of that.  I know everything can be managed. 

I know I'll be a mess this weekend with the anticipation of it.  I know I'll be a mess that day, getting the needle and having the chemo start.  I might be a mess the entire day in the infusion room. 

I'm more scared about losing my hair.  Being bald.  Looking sick.  That part scares the shit out of me.  I don't know if I will be able to look in a mirror.  I don't want to lose my hair.  The closer it gets, the more scared I am about it.  It sucks.  That part sucks.

I have 5 wigs.  Three have been trimmed and are ready to go, the other 2 are new and were shipped to me.  I have scarves, wraps, hats.  I have plenty of ways to cover my naked head.  But I just don't want it naked! 

I don't know how I'm going to handle it.  I don't know what I'll be like when I'm bald.  That scares me.  Emotionally, I don't know how I'm going to handle it.  Hearing "it will grow back" does NOT help at all.  Would you want to look in the mirror and see a bald, sick looking cancer patient staring back at you?  I know I don't! 

I think it is going to be REALLY hard for me to leave the house after that.  It will be really hard for me to see anyone.  ANYONE.  I don't even know how I'll be seeing Jim, having him look at me.  Even though he will be the one to shave it all off.  I'm going to be a FUCKING mess that weekend.  A FUCKING MESS! 

Losing my hair has been my biggest fear in this since day one.  The horror and shock of that first call telling me "the results are back and it tested positive for cancer".  Yeah, that sucked.  Knocked the breath completely out of me and left me a ball of sadness and fear.  You never want to hear those words.  Ever!  It sucks. 

But then my hair.  I LOVED my hair. Sitting wrapped with an elastic band, in a plastic bag, on a shelf in my closet.  Unopened since the day it was cut off.  :(  I can't look at it right now.  Sometimes I forget that its gone.  But I'm a different person now, without my long hair.  That Julie is gone now and represents the before cancer days. 

Now I'm Julie with the Purple Hair, preparing for months of hell with chemo, trying to get ready to be bald.  Trying to find the fight and strength.  Trying to be brave.  Trying to look the kick ass part that the purple hair brings.  It looks strong.  Maybe I'll find strength in it.  Maybe.  Hopefully. 

Then next is the Bald Julie.  That sucks. That's scary.  That's the sick months.  I'm afraid of that part.  I don't know where I can find the strength to get through that part.  And I just do NOT want to look sick! 

One thing I have been thinking of is what it will be like to be out with people who know I have cancer.  I don't know if I will be one of those brave and strong women who can embrace the baldness is just ROCK it.  I don't know if I can do that.  I might have to wear a wig to hide behind. 

And how will that be, being around people who know?  Who know its a wig?  Who know I'm bald? 

Either way... I'll get the look.  The pity look.  The you are sick look.  I do NOT want that look.  I HATE that look.  Even now when I get it, I HATE that look.  That's the look that makes me upset.  That look beats me down and hurts so much.  So much.  I don't want that look.

So I don't know how I will be.  Go out bald.  Or wear a wig. 

What about a Sunday Dinner in Jim's family?  The kids were already looking at me and a bit confused.  I had long blond hair.  Then short hair.  Now short purple hair.  Would the freak out if I was bald?  Or question why I have different hair whenever they see me?  Or how it is now brown and shoulder length when it was short and purple?  Not sure I will up for Sunday Dinner for a while just because of being worried about that one thing.  It sucks.

WOW, this turned out longer than I thought!  I'm meeting Brenda in just over an hour, I haven't showered and Jim said I need gas in my car!  Ooops.  Crap! 

And I wanted to say more too! 

Okay so quick.  First, the Ellie Fund.  OMG what a HUGE amazing help!  My social worker, well, my first social worker, Allison, had me apply.  WOW!  House cleaning services.  Four times, three hours each visit.  Food delivery.  8 Meals, each is 2-3 servings.  For February AND March. 

And yesterday I got a letter from them.  In addition to that... Grocery Store Gift Cards!  For February and March, each month, the store will mail me $150 card each month.  HOLY CRAP!  What a huge friggin help! 

I feel like I've been milking off of Jim.  He picked up a bunch of prescriptions for me in January and I gave him NOTHING.  We had an agreement when I moved in about me giving him money each month because I was not going to live off of him.  Too many ups and downs and mess happened.  But now that things are settling down a little (granted I haven't paid about $1500+ in co pays yet!), I can give him money.  Got my short term disability check mailed yesterday.  Going forward, they will be direct deposited.  So I can deposit this one right into his account to give him $ for January that I didn't give him plus hopefully cover the co-pays he paid. 

Just grateful for the Ellie Fund. Being able to cover groceries is HUGE.  Plus, the food delivery and house cleaning.  I can't contribute around the house.  And he does SO much already.  This will at least be a little off of him.

So if you ever have the chance to support the Ellie Fund... WOW!  What a HUGE amazing help to me!  SO incredibly helpful and almost like a little weight lifted making things that much easier to get through.



AND...
So chatting via email to my Brazilian Friend who had surgery on Saturday (mastectomy on her right only, but no reconstruction at this time.  They are waiting for chemo and radiation to be done. The she will have a mastectomy on her right and start reconstruction on both with expanders at that time.)
She has not yet looked at her scar. She's scared.  She doesn't want to see just one boob and a big scar on her right side. She's afraid of the mirror.  Especially since she started chemo in December and is already bald too. 

I looked on line for quotes.  She has a few tattoos.  I found one I LOVED and I knew that she would too. 

 LOVE IT!!  SO perfect for both her and me!  :)

And then I found a website.  The Scar Project, Breast cancer is Not a Pink Ribbon. 
http://www.thescarproject.org/mission/
VERY VERY Powerful.  Strength and courage is all I see. 

If you look at the site, read the mission first, then click on the images.  Just powerful.  And Beautiful.  Very Beautiful. 

Maybe I'll have that courage and strength at some point.  Maybe. 

Sticking to the Up Side of life... looking forward to meeting Brenda and catching up.  Staying with the positives and remembering everyone I have on my side helping me through this.