Friday, January 18

Last round of something something..

Gosh. where do I start. Honestly, today was one stressful day for me. Day started out great. Awesome day. Wohooo.. But everything changed when we entered CHLA doors. To be exact--- CHLA outpatient pharmacy , which is now WALGREENS.
On our way upstairs I payed a visit to pharmacy because I wanted to pick up Reginas CHemo drugs... I knew Dr Dhall's team faxed rx to pharmacy last week. Guess what, walgreens did not receive their fax. So upstairs I go to see what happened.
Day hospital faxed it again and this time they received it... Usually it takes about one hour for them to fill rx's.. But this time it took 3 fuckin' hours. I was vivid. AND I had right to be . OF course things have to brake just before it is my turn to get meds. So I got Reginas etoposide( one chemo drug,,, and then , walgreens scanner stopped working... OR pharmacist printed out WRONG label that did not scan. SO they DID NOT GIVE ME reginas chemo drugs. I wanted to cry right there. THey told me to come back on monday... I just looked at him and told him =- You must be kidding me. I live in Laguna, and because of your broken scanner, or wrong code I have to waste 4 hours of my valuable time JUST TO visit you for one minute????
NOW, that is ONE REASON why I like Reginas meds to be refilled at least few days before chemo starts...( REason why they did not trust me with those chemo pills- is - Co payment for them was almost 300 dollars. !!! DUH. Come on ???? I visit that pharmacy at least 3 times a month, they know my by name...

I also told them, there is NO WAY I am coming back to chla, so please fax these prescriptions over to LAguna walgreens AND MAKE SURE, they have drugs by monday, if they do not PLEASE CALL ME!!!. I can't handle this kind of mistakes or errors very well. I just cant... I also cant handle people who question my values, and ways of living the way I live, and the number one thing that bugs me is- seriously- do you really think that I would take REgina to school when she could infect other kids with her " health" issues... SerioslY???

OK. Now about cool stuff... After that stressful noon incident.. We managed to keep our sanity and headed to Pershing Square ( spelling). It is in Downtown LA. REgina is one of Sunshine kids :)
Amy( and his team) from Sunshine kids invited us , and other neuro/onco families to outdoors Ice skating . REgina was so exited to to it. It was her first time on Ice, and she was just all in smiles.... UNTIL... bang.... she fell flat on her ass ... She tried to protect her but with her hands, but instead she ended up hurting her both hands. :( Poor REgina, she was in tears. I never seen her so sad, she never cries because of pain and to see her crying just broke my heart. She was upset and sad and in pain... It was her first time and it had to end up like this... Ijust hope that she does not give up after this :)
When GABRIEL saw REgina fall, he also stopped skating and sat besides Regina the whole time. HE even fed Regina food, because he did not want REgina to feel any pain.

Now we are back home, and Regina is doing ok. Her wrists still hurt, but she is doing ok. She took her chemo and did not complain a bit. :)
Now, mommy Diana needs some stay sane thoughts. I am beyond stressed right now. I may look OK and crack my "stupid" jokes. The truth is, i am not ok. I do not think that I ever been so stressed. I want to see more happy people around me. I do not want people feel sorry for me, or tell me how strong I am.. I am not... I am loiek you, you , you ,and you... and Right now I am just like you... I am tired and sad, and unsure whats going to happen next....


Kathy said...

Diana, you'll never be like me. We're different, you're strong and me I'm way more paranoid and neurotic than you could ever be :-)

I'm going to see if you can read my mind and I'm not going to make any comments at all about the fact that you have to pick up chemo drugs at the pharmacy and take them home.

I see they've pre-measured all your doses for you. I'm kind of wondering why you can't buy etoposide in a bottle, them measure the doses yourself. As a matter of fact they could just sell you the powder and mix it yourself with water.

Or better yet, they could sell you the active ingredients and you could mix it yourself on your stove at home. That should really save on your co-pay. You could even make up extra and sell it to other patients for less than their copay and make a few extra bucks to apply to your medical bills.

All of you, hang in there.

Terri said...

BIG HUGS Diana!! Did you skate????

Julee said...

Hi Diana,

Would you and Nick (or just you) like some alone time? I am available Sunday or Monday to watch Gabriel and Regina. I need all the practice I can get. Also, I have a Disney DVD Bingo game just waiting for the kids. It would be my pleasure, just let me know.

Sleeping Beauty said...

Yes Kathy... lol I asked them what't the big deal, why can't you give me just bottle and I measure it myself... Their answer was -( kindof sorta like this ---- We do not roll like this in ) So after that comment I just rolled away... hihi.

Terri- I went and did some skating with Regina and Gabriel, but after Regina fell I just felt guilty skating more.

Julee-- Nick is traveling and will be back on this upcoming friday.
AND YES please come on over on both kids will be home. I am not saying no to any offers i get these days ;););) call me..

Kathy said...

How is the chemo going?

BTW, you should drive down to San Diego on the 31st and go with us to the Country Cares radiothon.

It's on February 1st as well.

We're leaving for Memphis on Superbowl Sunday.

Never a dull moment, as you know better than I.

Sleeping Beauty said...

Actually, chemo is going pretty well. She is full of energy, but started coughing last night.
I have a feeling that REgina will be inpatient on first of february. She gets her stem cells back of first or second of February.