Monday, September 27, 2010

Day by day I gazed upon her, Day by day I sighed with passion, Day by day my heart within me Grew more hot with love and longing

Sitting on the couch watching's 5 after 11: pm......and I'm really enjoying the sound of the rain outside and the smell.......I love the smell of rain. Tina loves it too......I'm tempted to wake her and make her come sit with me......LOL.....doubt that would go over too well......"you woke me up so I could smell the rain?!?!, are you crazy?!?!".......the answer to that question we all know is....."YES, yes, I am crazy....duh!"

Then again she might find it amusing that I woke her to smell the rain.....hummmmm????

Living one day at a time......the days blend together with moments here and there that stand out. I do love being able to spend all this time with T.....I just wish she wasn't so sick.

Had a visit from our adorable nieces the other day, and T's bro and sis-in-law......I love spending time with them, especially little Remmy who is just adorable in every way. She is so little and yet full of personality.....there is nothing more beautiful then children her age....still discovering the world and already so smart.

T was so sick that day, but hid it well, so she could see and enjoy all their company. Every time little Remmy called her Auntie T, T's face lite up like a Christmas tree.....she was exhausted by the time they left, but it was the best thing for her......just brightened us both up actually. Kids have a way of doing that....and we get to be the cool aunties that live over an ice cream parlor......oh yeah! Lovin' that.

rut roh, she's up......not to smell the rain......nausea bad.....

10 minutes later.......OK, feeling better she's sitting next to me and I shit you not, she just sniffed the air and said she loved the smell of the rain and wishes she could go out and dance in I know my girl or what?

Saturday, September 25, 2010

Adriamycin and Cytoxan

Friday was round 3 of this little cocktail of chemotherapy drugs for T.......1 more to go in 2 weeks and then.....

....and then we change the drugs and see the surgeon to discuss what comes next.

  1. surgery, reconstruction, more chemo, then radiation
  2. surgery, more chemo, radiation, then reconstruction
  3. more chemo, surgery, reconstruction, more chemo, then radiation

I'm thinking option 3, but we shall see, depends on what the surgeon thinks.

T is having a hard time....cabin fever. We had company one night last week which was really nice. T's friend S came over and we had home made pizza. It was good too!....and it was nice to have company.

Can't wait 'til tomorrow.....her brother is coming over with the girls.....this is the 1st time they will see Auntie Tina with no hair. She gets a kick out of the way kids react to her being bald. She gives them a big smile when she catches them starring. It's cute how amazed they look and the big smiles T gets in return.

As for me, I teeter between OK and pissed off at the world and everyone in it......about every 2.5 seconds. Trying to keep that under control is not easy.

Sunday, September 12, 2010

Hair Today, Gone Tomorrow

Had 2 whole good days where Tina didn't feel too bad. Even had company over one night and made it to the Oyster Fest for about an hour.

Today sucked! and tomorrow doesn't look good either. T's hair has started falling out in clumps and her scalp hurts something awful.

What's worse is she's shutting me out.....this has all been the most horrible experience ever......I do as much as anyone who loves someone going through this can do and sometimes she says she appreciates it and sometime, like today, she just shuts me out completely. She's been in the other room almost since the second I got up this morning and now it's night and she will no doubt fall asleep for the night.

I feel helpless, rejected, and worthless.

I've been alone all day in the living room.....looked up some things to help her scalp pain, but she won't even try them......she just wants to be alone in bed.......I don't think I've cried this much in my entire life combined....I was so upset I even threw up a few times, and if you know me, i never EVER throw up, no matter how sick I get.

Feeling miserable, rejected, alone, life sucks right now.

I love her with everything I am, but what does it matter..........

Friday, September 10, 2010

Chemotherapy #2 Today

Tina is at chemo right now with her cousins who came down all the way from NY just to go sit with her while they pump her up with chemo. meds and fluids. I feel weird not taking her myself, but she wanted to accept all the offers of different cousins to go with her to a chemo. treatment.....that way she can both spend time with them and visit and also let them know that she appreciates their support.

Cousins she sees maybe only once a year at a family function now and again, all stepped up when they heard she was sick. They organized a night out just to spend time together before her 1st chemo., they are organizing a fundraiser/benefit for her, and they have been writing her on-line, sending cards, and calling regularly, just so talk and offer support. It's a beautiful thing that gives me hope and it makes me so happy when her phone rings and she smiles at the caller ID and happily picks up the phone to chat with them.

I'm dreading this evening and wondering how sick this will make my girl tonight and in the days to come. I'm hoping her new medicine for the nausea will make it easier then last time and that the extra fluids will help as well.

Tuesday, September 7, 2010

Just in time for...

...her next chemotherapy.

Finally T feels a bit better and even made it to work yesterday for 6 hours. I don't dare let her drive herself though....when I picked her up yesterday, she almost instantly fell asleep in the car. Today looks like she's going to make it through a full day at work.

Her next chemotherapy is on Friday.....sigh!

I hope this treatment goes better then the last one. They found 2 drugs that actually help T's nausea and they will give those to her with her chemo. and also they will give her extra fluids before we leave too. Cross everything people!

She will most likely begin to loose her hair after this treatment. She knows it's coming, but I know her, and this will REALLY upset her. I just hope I'm with her or that it happens gradually.

I've been sleeping less and less.....even when i do drag myself to bed I just can't turn my head off....I lay awake worried about EVERYTHING.....exhausted and wired all at the same time....hard to explain.

Friends and family love us and call from time to time to check in, but this is one of those things that you think you know what it would be like.......until your in it, and you see what it's REALLY like, and realize that no one who hasn't actually been there has a clue....which sucks because you need them to understand. That's why everyone in that chemo. room is able to bond with the other patients so quickly and easily.

A friend from way back in high school, who has gone through all of this contacted me today. Just talking to her made me feel better. We don't talk often, but she is one of those rare people that you can not talk to for years and when you do, it's like no time has past. Thanks Facebook for making communication so easy with old friends....and thanks Toula!

I am grateful for my friends love and support and T's family who just jumped right in, to be there for us. Her cousin L is going to have a benefit/party for her and is going all out with everyone on that side of her family all jumping in to help....I wouldn't have a clue as to how to organize something like that, so I'm really thankful to him for having the idea and making it happen.....I'll write more about that as it gets closer and we pick a date......just thank you everyone!

You might not think that a hug hello or a text or call means or helps much, but it helps more then you could breeds hope....and reminds us, at our loneliest moments, that we are not alone.

Wednesday, September 1, 2010

Neulasta Shot - Mobile blogging

Wholly crap! This shot is supposed to increase her white blood cell count...but it also makes her bones ache, and makes her skin so sensitive to the touch...lots of pain.

On the plus side, I dragged a reluctant T back to the doctor today and they found the winning combo of anti-nausea meds FINALLY!

God I hope this makes the next round of chemo easier!

Another patient who did the same chemo meds said she was as bad as T her 1st round and that her 1st round was by FAR worse then the rest. That made me feel better about all this.

Until this afternoon T has been in so much pain that she spent the last 2 days mostly crying...broke my heart.

So glad she's feeling a bit better! Still to exhausted to do much, but at least she can eat now...yay!